The Last Few Months!

In October 2013 our son Charlie started to get a little swollen so we decided to take him to the Dr. to see what was up.

The Dr. had some blood work done and decided that Charlie had hypothyroidism, so we started treating that with some medication. After a week or so on the medication and Charlie getting more and more swollen we took Charlie to the Emergency Department (ED) at The Children's Hospital in Minneapolis. After many different tests is was decided two things one that Charlie was going to be admitted and two that Charlie has some sort of Nephrotic Syndrome. 

Nephrotic Syndrome is a sickness of the kidneys. There are a few different kinds of Nephrotic Syndrome and because of Charlie's age they thought it was Minimal Change Disease. They treat that by giving steroids and it should clear up within 6 weeks. Three hospital stays later the 6 weeks was almost up and Charlie was not getting any better. December 11th it was time to do a kidney biopsy on Charlie. We got the results on the afternoon of December 12th...

December 12th

The Dr walked in to give us the results of Charlie's biopsy our good moods quickly turned to heart break and sadness.

We were told that Charlie has a very rare disease that he has had since birth.

The disease is called  Diffuse Mesaginal Sclerosis.

There is not much information on it as it is so rare. From my understanding it is a genetic disease that in our case is most likely a result of our combined DNA. The hospital we were at U of M Amplatz Children's Hospital which is world renowned for paediatric kidney diseases has only seen what Charlie has 6 times.

At the time of the biopsy Charlie had 30% scar tissue in his kidneys, that is irreversible. The Dr also said that Charlie will need a kidney transplant by the time he is 3 years old. When we got the news Charlie was 22 months old, so two months shy of two years old.

Since that time we have been getting blood work done on Charlie twice a week. Seeing his Dr. once a week and talking to Dr.'s or nurses almost daily. We have been trying to get the correct medication cocktail with it changing a little here or there every week. Charlie currently is on around 13 different medications daily and most are 2-3 times a day. Since his first hospital stay in November Charlie has regressed to the point where crawling was a struggle and walking was out of the picture. He is crawling more and more every day and holding our hands to help him walk. We are so proud of him! It is some times hard to think that a few months ago you couldn't slow Charlie down if you wanted to. He was running, walking, climbing and getting in to everything, then it changed so fast.

Every day we are grateful for our kids!

Natalie has been amazing through all the hospital stays and changes to our lives. It is hard for her that her little brother is sick and that he can't keep up with her any more, but she helps out so much every day. and tells people they have to be careful because her brother is sick. She doesn't understand what Charlie is sick with she just knows that we get to give Charlie lots of medications and that Charlie goes to the Dr.'s office a lot. 

Charlie is also on a strict renal (kidney) diet, he is only allowed 24 ounces of fluid a day, 2 grams of salt a day and he is restricted on potassium and phosphorus. This makes our day to to day meal planing challenging. 

Some of you may or may not know that I am pregnant with our third child.

He or She is Due at the end of February. Both kids are really excited for a new sibling. We are praying that this baby does not have what Charlie has because we were told that there is a one in four chance we will have another kid with the same disease.

If you have any Questions please ask in the comments. 

There is so much more info but this is all my brain can handle for tonight.