Thursday, November 28, 2013

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!


Tuesday, November 26, 2013

Genetics update

For some reason I chose today to call Logan's genetics office to see about an update on some pending DNA tests. He had blood drawn in October 2012 for Exome sequencing. This was a two part test that was going to take about a year to complete. The first part came back normal.

We had been expecting the final results by now but it hasn't been in the forefront of our minds. Today it was on my mind for some reason. Well in true Logan fashion, we couldn't get clear cut results. I was expecting normal results as this has been the pattern thus far. 

Instead the genetic counselor said a variant was found on Logan's X chromosome. It was reported by the lab as a variant of unspecified significance. This variant is known to cause developmental delays and cognitive impairment. The kicker is, within this variant is a mutation. Logan's mutation has never been reported before. 

So what does this mean? Who the heck knows! I have a feeling it is just an incidental finding but I could be wrong. The genetic counselor was giving me the raw data considering the results had just arrived yesterday. Logan's geneticist has not had a chance to interpret the results. So the counselor and doctor plan to do some research and get back to me next week. The counselor did say that the variant found does not cause degenerative disorders and that is why she is skeptical of the findings. For those who don't know, Logan's brain is degenerating. 

So we wait and trust me, it isn't easy. Answers won't fix Logan but they may give us a better understanding of what is going on. I am glad I didn't push for the name of the variant, otherwise I would be all over the internet right now! In the meantime, we will spend a wonderful thanksgiving with family as we have so much to be thankful for! 


Monday, November 25, 2013

Where has the time gone!

Wow, where did the time go. This blogger fell off the radar! 

To be honest, life is great. Life is also busy, but what's new. I can't believe this week is thanksgiving. So much to be thankful for. I was talking to one of the chaplains at work on Friday and thought, one year ago, almost to the day, Logan had his trach surgery. November 20th was the day. 

I remember that day so vividly. I could sit and write every detail down like it was yesterday. I had so much confidence in Logan and his doctors on that day. I just knew we made the right choice. And fast forward to today, it was the best thing we could have done. 

The one memory of that day I really want to share was seeing Logan's face for the first time. Prior to that, he had a breathing tube in his mouth with all sorts of tape wrapped around it and plastered to his face. To see his darling face again was a gift from god. His skin so soft and kissable. His little lips puckered up like only Logan can do when he is sleeping. 

And from that day on, life continued to move in a positive direction. Logan is healthy and content. He has toddler moments from time to time, but all in all is an amazing young man. And this year, we are all home for thanksgiving! Whoo hoo! 

This is the most recent photo I have! I am working full time these days so the mommy photographer has been on hiatus! He loves his Thomas the Train pillow! 


Sunday, November 3, 2013

Halloween 2013






Halloween 2013: 

We had a decent Halloween. It was a little chilly but we were able to get Logan out trick or treating without having to cover his costume with a jacket. I made it to a couple houses with the kids. Lauren had a major melt down at the third house and at that point I was ready to be done. Logan's wheelchair was a pain to get over the curbs and up driveways. Once we got to each house he had to wait back away from the doors as he couldn't get up the stairs. 

There are times where Logan's experience is modified in a way that ticks me off. I can control a lot of experiences he has but this was not one of them. So instead of being okay with it, I got mad. I was on the verge of tears and fuming mad. I want him to have as many "normal" opportunities as possible but when they don't go well, I start to think it is easier to just not participate. But that's not fair for Logan and who am I to say that he didn't enjoy trick or treating. So finally our cue to go home came in the form of rain! Hallelujah for mommy! 

We returned home and Lauren and Joel continued the hunt for candy. Logan assumed the job of welcoming committee as I handed out candy. He seemed much more content in this role and I was much more relaxed. All in all we survived. I wished we had a better experience but that is the mom in me. Nothing is ever good enough! 

On another note, tomorrow marks one year since Logan's big febrile seizure that landed him in the hospital for over 40 days.  I spent a few minutes today reading my blog posts from those first few days. It was hard to read and I couldn't help but cry. The emotions feel so fresh. I will save my thoughts for a post tomorrow. Until then...



Tuesday, October 22, 2013

He's Three!

Today was the official day, Logan's third birthday! Three years ago at 6pm on a Friday, Logan came into this world. He did not cry on arrival and his nose was smushed! He had a head of light brown hair and dark eyes. When I held him for the first time, I remember those dark brown eyes staring at me. 

He was born two days after his due date. Our OB was working that weekend so she offered to induce me that Friday. I had a smooth pregnancy and was ready to have him. We arrived after lunch and the medications were started after 1:00pm. By 5:00pm, the doctor decided it was time to break my water. Minutes after, the contractions were fast and furious. I requested an epidural with the help of my mother! Unfortunately it would not be in time. Before I knew it, I was having an extreme urge to push and I knew there was no stopping the train. I remember looking at the nurse saying I had to push. She must have gotten my drift. Instead of encouraging me to breathe through it and resist pushing she called the team in and prepped the room. Next thing I knew, the doctor arrived and ten minutes later our angel came into the world.

I will never forget the pain I endured during those moments but it was one of the most productive times in my life. I felt so proud to have brought this handsome baby boy into the world. Joel and I were over the moon. 

The journey since that joyous day has had its ups and downs. Through it all, my handsome, porcelain skin, brown eyed, cuddle bug perseveres. He has taught me how to be a better mother and a more patient and forgiving human being. He has taught me true unconditional love. 

His second year of life had a rocky start with the first portion spent in the hospital. Since that time he has remained home. He is in preschool and has friends. He is finding his voice again with assistive technology. He loves watching the iPad and reading books with his sister. He and dad watch sports together. As for Logan and I, we cuddle, we talk, and he blows me kisses. 

Logan, I know our future is full of unknowns. You live with an undiagnosed condition that affects everything you do. But despite it all, you wake up every day calm and ready to take on the world. I am so proud to be your mom. 

Happy Birthday Bubba! We love you! 




Here are a few past photos of each year in October. Wow he has grown!

Logan's 2nd Birthday


October 2011

 


Newborn Photo, October 2010





Saturday, October 19, 2013

Logan's 3rd Birthday Party

We celebrated Logan's third birthday at the pumpkin patch. His real birthday is the 22nd. The weather started cloudy, windy, with some sprinkles. As the afternoon went on, the sun came out just for Logan! It was a great day! We took a hay ride and Logan slept through half of it! We visited the animals and Logan held a bunny. He had a taste of cupcake frosting. And with the help of his sister and cousins, opened many wonderful presents. We picked out a few pumpkins and had a few photo ops. All in all, an awesome day. Thanks to all of our family and friends who came out to celebrate. We are so lucky to have each and every one of you. Go Logan Go! 























Saturday, October 5, 2013

Night Shift

Tonight I have the pleasure to watch over Logan. Every night we are blessed to have a nurse care for him so that he can receive the care and monitoring he needs and so we can rest. Logan is a pretty busy kiddo in the wee hours of the morning. He does a great job getting to sleep but it does not last the whole night through. He generally wakes up in the middle of the night, thrashes about and then passes out again. He procedes to do this multiple times until morning. Every night varies. Some better than others. He requires frequent suctioning, vital signs monitoring, medications, and water flushes. 

I have my alarm set for three different times tonight to make sure I give meds, change and check equipment, and flush his feeding tube. I have a baby monitor next to my ear as I get ready to sleep on the couch outside his room. I explain all of these tasks so those who may not know can understand Logan's needs. I wish I could provide the care he needs at night without the help of nurses but it is impossible. I wish I could be the one to console and cuddle him when he is upset at night. 

Thankfully we have amazing nurses to help us. Without them, our family would be in disarray and live in zombie mode! Tonight, it's my turn to be his caregiver. I wonder what he will think when I show my face in the dark of the night! He apmay be scared at first seeing my wild hairdo! 

I have also pulled open my blog as I feel I need to put some feelings down on fake paper, aka the internet. I am a member of Facebook and I follow multiple pages and blogs mostly of parents and their children with special needs. I do this for many reasons and feel an odd connection to so many of these families. Tonight I learned of yet another kiddo that has gone to heaven. I am so deeply saddened. I have followed his journey the past few months and now sit here on the verge of tears. My heart aches for his family. 

I sit and reflect once again on my life and that of my son. The future cannot be predicted. We will all leave this earth someday, this I know. But why can't we all live a charmed life before our time comes. Why do some have to suffer while others carry on in happiness. I can say it is to teach us all, or that it is gods plan. But right now that doesn't help. I don't want to lose my son to his illness and I don't want another child to either, but this is extremely wishful thinking. 

So as I reflect on my feelings and pray for this little boys family I will watch over my son and give him all the love I have. Life is so short so I will continue to commit to being present in the moment and living the best life I can. 

Good night and god bless,
Rachel


Monday, September 30, 2013

Still here!

I am still here! My blog posts have been sparse in the past few months. It was a busy summer and even busier fall. The kids are doing great. 

Lauren just celebrated her fifth birthday but she insists she is six. Why you ask? She had two parties therefore she had a fifth birthday party so her second party had to have been her sixth birthday party. I'm not sure how we are going to fix this snafu. She is so stubborn and my tactics have yet to change her mind! Oh well. I guess we will skip being five and have to explain the mathematical error to her when she is older and we can embarrass her! This is one of the fun reasons to write a blog, memories are logged forever!

As for Logan, life is good. I have to knock on wood when I say that. Lauren was sick with a fever last week and I was sure that Logan would catch it. So far so good. I thank that trach every day for the improved quality of life for Logan. It's seems odd to say but it is true. He is doing great at preschool. His nurses say that they keep him busy the entire time. It sounds like his school has some awesome adapted equipment. I am jealous! I want spin art hooked to a switch for Logan! I guess that is what makes school so special for him. 

Soon Logan will celebrate his third birthday. Wow, he is getting so big. There were many days that I didn't think we would be celebrating his third birthday. As we creep closer and closer to November, the memories of his last illness rush back like it was yesterday. We almost lost him. Wow, what a blessing we have been given. Life is so fragile yet Logan powers through it like a body builder! I can't wait to blog about his party! 

So for now, updates may be few and far between as we adjust to having both kids in preschool, tons of family fall birthdays, and mommy starting a full time job. Thanks for keeping Logan and our family in your prayers. We are coming up on flu season. It is a scary time of year for families like ours so make sure you think long and hard about immunizing yourself. We cannot live in a bubble but we can do our part to not pass germs like influenza and pertussis with the help of vaccines. It is a very personal choice but please think of those in your community with compromised immune systems when deciding to vaccinate or not. 

Ok, now off my soap box! Can you blame a momma for trying? Hope to write again soon...


Friday, September 13, 2013

Back to School

Logan and Lauren started preschool this week. This is Lauren's second year and Logan's first. We started with orientation last week. 
   
Here is Logan scoping out his new class at open house
Logan's school has a lift like an elevator to get him down to class. The lift was a little scary at first!


This is Logan's locker (a little obvious I guess!)



Lauren's first day of preschool was Monday. This year she has a new teacher and a new crew of classmates. I think she will do well. 


I

Waiting at the curb for the school bus. 


Here it comes!

What a lucky kid, he gets his own special door onto the bus. He is a little king. Plus he is the cool kid that sits in the back!


See you later bubba! 

This is when I lost it in tears! Lauren was almost in tears as well. She wanted to go with him to help him at school. She is the best sis ever! 


Here are some play by plays from Logan's nurse. She said he stayed awake almost the entire time! 


The day has come to an end! Little man is exhausted. Mission accomplished!


Welcome home Logan. If he only knew how much Lauren missed him. She pestered me the entire time he was gone asking when he would be home. It was a new and confusing experience for  her. Normally Logan stays at home with Joel or his nurse while Lauren and I go out. Otherwise he is with us. Today he was not at home and not with us! 

We all survived. I pulled it together after he left for school. Lauren finally calmed down when he came home. I don't think I have ever seen her give him so many kisses. Those two have such a special bond!

The rest of the preschool week was smooth. Lauren is making friends and Logan is supplying us with endless amounts of artwork from class! 

















Tuesday, August 27, 2013

Minnesota Twins

I am very behind with blogging. We have been a busy family over the past couple of weeks. As summer winds down we have seemed to go into high gear with activities. Two weeks ago our family had an opportunity to attend a Minnesota Twins baseball game. Logan's physical therapist hooked us up! We were put in touch with Lizz at the Twins who made bucket list item #1 come true.
 
Lizz and a few others at the Twins made our wildest dreams come true and I hope Logan was as excited as we were. We were able to attend batting practice on the field, meet a few players, and watch the game from some great seats. It was a blast!
 
We are so blessed to have been given this opportunity. Family time for us normally consists of hanging out at home in the yard with family, friends, and neighbors. We tend to stay close to home out of comfort and habit. Taking a child out and about with a tracheostomy and feeding tube can be challenging.
 
Lizz, who works for the Twins bent over backwards for us. She had the gate attendant ready when we arrived and she quickly came to meet us. We were given fun game memorabilia. Lizz also had a bag of goodies including candy, a game ball, and a scorecard.
 
She gave us a tour as we walked to the field entrance. We learned fun tidbits about the stadium along the tour. It was overwhelming walking onto the field. It was so big, clean, and green! The weather was perfect. Sunny and warm with a little breeze. The players were just starting batting practice. Lizz had us stand behind home plate next to the dugout. It was amazing to stand there and look out at the field. It was beautiful!
 
Lizz introduced us to some of the Twins staff members, an FSN newscaster, and she pointed out some of the game announcers and even a former Twins player that made it to the World Series. Bear with me, I am doing my best to describe this in baseball lingo and trust me, this post may have been better from Joel's perspective!
 
Next we met some of the players! They were all so kind and took the time to meet Logan and our family, talk with us, and sign the game ball and a Team Logan shirt. After being starstruck we headed to our seats which were on the main concourse behind home plate. We had plenty of space for the wheelchair and were not squished into bleachers! Lauren loved being able to watch the game and run around in our little space too. She was such a good girl! I hope she remembers it!
 
To follow are some of the photos highlighting our experience. We had such a great time and Lizz and all the staff made us feel so special. Lizz helped us make memories that will last a lifetime. Logan may not remember it someday but we will. We will remember the look on his face as he met the players, flirted with the ladies, and cheered the players on. 
 
GO TWINS! 
 
 
On the way to the game, probably the only picture you will see of our nurse Cora. We couldn't have done it without her!
 

 
Our version of a family picture! Lauren wasn't in the mood for posing. She preferred Logan's chair, the team yearbook, and candy!
 

This is one of my favorites!

 
 


 
Lizz gave Lauren a previously used game ball. She acquired a ball hit in batting practice too!


 
 
Logan was a total flirt! Lizz is in the red jacket.

 
Joe Mauer getting ready to hit. What a view we had!

 
Logan met Josh Willingham. He was so nice and had Logan's attention immediately.


 
Logan met Kyle Gibson (pitcher)

 
Kyle shook Lauren's hand. We missed the photo. Here she is getting her ball signed. He also asked if she wanted to put on his glove. She became shy Lauren and hid behind Logan's chair. I think she had a crush on him! He was so sweet to her.

 
Justin Morneau was over visiting the kids seen in the right of this picture in the chairs. He turned around and saw Logan and came right over to say hi.

 
Justin was so nice and just a "normal" guy. He talked about his family and asked us questions. He offered to sign our ball and take a picture and Joel did a great job getting all the players we met to sign the Team Logan shirt. Justin wrote, "To Team Logan, all the best, Justin Morneau"

 
I swear I didn't mean to be the only one in the photos with Logan and the players!

 
Joe Mauer didn't have a chance to stop and say hi right after he left the field as he had a cut on his finger that needed to be taped. Josh Willingham noticed Joe hadn't signed the Team Logan shirt so he told us he would get him to come up. Ten minutes later and no Joe so we started to plan on heading to our seats. Lizz's boss was so kind and went to the clubhouse and asked Joe to come meet Logan. As you can see he came and was very kind to take the time to meet Logan. Thanks Joe!

 
A tuckered out little boy! This was one of very few moments where he closed his eyes. He tried so hard the entire game to stay awake. At first it was too loud and he was upset but after a while he became accustomed to the noise and it did not bother him.

Our bat girl!


 
The view from our seats!