Rare Disease Day

This update feels a little delayed. I always have good intentions of posting immediately following any big appointments that Levi has, but I am learning that it takes me a bit to really process everything before I can put it into print. So here it goes…

We met with a pediatric pulmonologist and pediatric cardiologist on February 17th.It ended up being an all-day affair, and our little trooper did great!

We met with pulmonology first, and the first thing the doctor said when he walked in was, “What can I do to help you guys?” We always appreciate meeting doctors like this. We know that the rarity of his disease not only means most doctors have never dealt with this diagnosis; it also means that most doctors have never heard of LCMD before we walk into the room. When we find a doctor that is willing to admit this and listen to the research that we have found we hang on tight. At this first appointment the doctor sent us home with a cough assist, a nebulizer, a suction machine, and a small tool to do chest physiotherapy. The cough assist, nebulizer, and chest physiotherapy are all to be used on a daily basis. As you can imagine, this is quite the challenge. We are trying to find the best way to get all of this done with the hope that soon it will just become part of our routine. Levi handles all of it extremely well. We were nervous about the cough assist because he fought it HARD when they tried it on him there, but he has caught on to how it works and seems to genuinely enjoy using it.

Our next stop was pediatric cardiology. We feel so blessed to have the cardiologist that we have. Both Kyle and I were very impressed with him at the appointment. He did a quick echocardiogram, and Levi’s heart looked strong. Levi will have more thorough testing done on his heart when we visit the Mayo Clinic in April. However, after that initial heart “work-up” we will be able to do all testing and follow ups in Fargo. Levi will be seeing both the pulmonologist and cardiologist every 6 months. We plan to coordinate those appointments with the MDA Clinic. We also will schedule it so that his 6 month check ups with his neurologist (at Mayo) fall in between the 6 month visits to Fargo. We feel this is the best course of action as it allows him to be seen every 3 months by one of his doctors.

We have also been in contact, via phone, to a doctor that works with Cure CMD. She has connected us with 2 other families that have a child with LCMD with similar weaknesses to Levi. Being able to talk with them about how they live day to day has been very helpful. One of the families lives in Spain and only speaks Spanish (thank goodness for Google translate!) and the other family is in California. This doctor from Cure CMD also recommended that we get a stethoscope and pulse oximeter to be able to closely monitor Levi when he seems to be getting sick. We are slowly building a small arsenal of medical equipment in our home with the goal of staying out of the hospital as much as possible! There is a piece of equipment that we are really hoping to acquire at some point. It is called the Alpha 300, and it is used for positive pressure breathing therapy. The only problem is that it is not available in the US. We are working with the family in Spain (they use it with their son) to see if there is a way that we can get our hands on one. Levi also now has his neck brace, and we are pleased with how well it works for his needs. He wears it in the car and when he is being pushed in his Kimba.

We were in contact with our contractor this week, and we will be breaking ground as soon as the frost is out! We are currently working on financing and a place to rent while the work is being done.

In light of Rare Disease Day (today!), we wrote an article for our local paper this week informing our community of Levi’s disease. It was a difficult article to write and an even more difficult one to see on the front page of the paper. Feel free to check out the article by visiting www.cavalierchronicle.com.

In fun news, Levi attended his first hockey game last weekend and had an absolute blast. We also attended a local HS basketball game. As difficult as it is to get our family out and about, we plan to do so as much as possible. It’s important to us that Levi experiences as much of life as he can, even if the logistics of making it happen are very challenging for us as the parents.

Current prayer requests:

-Levi’s upcoming cardiac tests and sleep study (April 16-17)

-Finances regarding the house project

-That the Lord would continue to strengthen our marriage

“How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I wrestle with my thoughts and every day have sorrow in my heart?

How long will my enemy triumph over me?

Look on me and answer, O Lord my God. Give light to my eyes, or I will sleep in death;

my enemy will say, “I have overcome him,” and my foes will rejoice when I fall.

But I trust in your unfailing love; my heart rejoices in your salvation.

I will sing to the Lord, for he has been good to me.”

Psalm 13

We may never understand why God has chosen this path for Levi, but we trust in His unfailing love. Knowing that Levi is part of a bigger plan doesn’t take the pain away, but it does give purpose to the pain. This life is not for us. This life is not for Levi. This life is for Him. We will continue to declare His name regardless of our circumstances. The Lord is good, and His love endures FOREVER.

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