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!

 

 

Noise making

Logan had another try with the passy-muir valve this evening. The respiratory therapist came over to trial it and after a short period of restlessness, Logan again became accustomed to it. We will trial it one more time on Monday and then get official doctors orders directing how and when we can use it. I have attached a short video with some noise making. He was pretty relaxed at the time and was cooing at me. He continues to melt my heart!

http://youtu.be/sOGRnZEc0Jw

Cousins

                               

    

My niece Sarah left this world five years ago and now looks over us from heaven. She was only two and a half. Sarah had a neurodegenerative disorder that was undiagnosed. She and Logan have shared a lot of similarities in the path of their lives while both placing a unique spin. Both with feeding tubes and both with chronic respiratory infections. Both children with severe developmental delays.

Now most recently, we know that both share almost identical changes of the brain. My sister had a copy of Sarah's MRI sent to Logan's geneticist. The geneticist as well as three other doctors viewed both children's scans and agree that the degeneration is almost identical. WOW!

This is a huge clue in the search for a diagnosis. Now we know that this is most likely something passed through the maternal DNA as it is my sister and I that conceived our children. Had it been me and a sister in law this would not make sense. Most mitochondrial disorders are inherited. Mitochondrial DNA is inherited from the mother. Nuclear DNA is inherited from both parents. This is why we now will move toward further mitochondrial testing.

So, it may be that I gave Logan this elusive problem. I could sit and blame myself and feel all the guilt in the world but right now I don't. How could I have known? Hopefully we will find a diagnosis and target where the mistake in Logan's DNA happened. We may not be able to fix Logan but we may help future generations in our family.

So this now sends us down the path of mitochondrial testing. We will wait for his Exome sequencing to come back and then pursue new testing. In the meantime, we continue the biotin and thiamine therapy. The large arm and leg movements Logan makes seem to be less severe. We think it may be from the supplements but are not sure. He sees the neurologist in two weeks. We hope to gain more insight into the therapy at that appointment. 

On a reaaly high note, Logan had a speech therapy appointment. We have been waiting for the okay from his doctors to start using a passy-muir valve. This is also known as a speaking valve. I have been anxiously waiting for this day hoping it would work. Praying to hear my son make noise again.

Guess what, he did. He was a rock star and performed better than expected. The speaking valve can be dangerous because it only allows air into the trachea, not out. A person using this has to be able to exhale through the mouth or nose. The goal is to have the air inhaled into the trach and when he exhales, the air passes through the vocal cords giving him an opportunity to make noise. He hesitated a first by holding his breath but quickly figured out that he had to breathe out of his mouth. He made a handful of noises and brought tears to our eyes. I don't expect him to speak but now he will have the opportunity to communicate wether by crying or noise making. This is so cool!

I will take a video next time and post it. I was a little distracted by the joy of hearing his voice again! Oh, the small miracles!

Here is a picture of the valve. The image is huge!

           

How far

I follow about a dozen or so blogs and Facebook pages of other kiddos with complex medical problems. Most of them written by their mommies. I identify with many of these moms even though our children have different needs. I find that we all write about similar experiences but each with their own unique spin. Each child different but often a path very similar.

We live our lives for our children and do anything we can to improve their quality of life. We fiercely advocate for them as they cannot do for themselves. We are responsible for protecting them. With a future full of so many unknowns, we live day to day hoping the worst case scenario never happens.

Recently I have been focused on what could someday be a worst case scenario for Logan and I am having a hard time wrapping my head around it. I am so fearful of him becoming sick. I worry that one respiratory infection could throw him into a tailspin that he may not be able to fight. 

We know that part of Logan's brain is degenerating. We have no clue what this means for his future. We are being told that he will probably continue to lose skills and have a harder time fighting infections as he becomes weaker. I worry that he will land in the ICU again and we will have to decide how far to go. How hard will we push to get him healthy and at what cost. 

I have been waging this inner battle of how far is too far. What is necessary and what is cruel. We live in a world full of life saving technology that can bring a person from the edge and back. As a nurse, I know these stories all too well. And with children, their resiliency combined with top notch medical care can often provide miraculous results. But I know too well the other side of these life saving measures. 

Joel and I have consented to life saving measures for our son and I actually acted out these measures on him myself when he stopped breathing during a seizure. We have put Logan through procedures such as a feeding tube and tracheostomy tube in order to prolong his life and improve his quality of life. But at what cost? He has to have a feeding pump connected to him by tubing almost all day, every day. He has an uncomfortable breathing tube in his neck that requires intermittent suctioning to keep his airway clear so that he can breathe. I could go on for pages telling you the downsides of what comes with these medical interventions. But without them we would not have Logan. 

But guess what, regardless of what we do for him, there will be a day when we don't have him. I just hope that when that day comes, I do not regret the choices we have made for him. I want to look back and know that I was a fierce mommy that gave it my all whether it be making the choice to consent for further intervention or making the choice to let go and give it to god. So far, I do not regret our path. I know that every decision Joel and I have made is done with careful consideration of all of the options. 

I am so proud to be part of a community of other mommies that are fierce protectors of their babies. I am not alone in this and knowing that, provides comfort when the fears of the unknown creep in. Thank you to all the mommies out there that share your stories whether it be by blog, Facebook, or day to day conversation.