Charlie's Hospital Stay Starting on January 20,2014

On Monday 1-20-14 Charlie got sick with what we thought was a stomach bug.

He had stuff coming out of all ends and had a fever of 101.

Most kids would not have to go to the emergency room for one day of the all of this, as most of you know Charlie is not "most kids". So off to Amplatz Children's Hospital we went. They almost did not admit Charlie but right when they were going to send him home he threw up his medications in front of the Dr.

We were told he would be there over night and then most likely get to go home...

A few days passed and they were still not letting Charlie come home, in that time they had told us he has the virus RSV, but RSV shouldn't keep him in the hospital. We were confused and a little annoyed that we were not able to go home because we wanted our little guy back home. I can't quite remember what day it was but they finally told us why they were keeping him so long and it wasn't because of Charlie's RSV it was because of Charlie's kidney's. Every time they drew blood and tested the blood it was showing that Charlie's kidney's were failing more and more by the day. They were drawing blood twice a day and each draw his kidneys were getting worse. The Dr. told us that Charlie needed to start dialysis as soon as he could. So they set up surgery for Friday the 24th as it turns out Charlie was to sick with the RSV to get general anaesthesia so they decided to put a central line in one of his arteries in his neck so they could give him some medications that are a little much for a regular IV to handle also so they could draw blood from the IV and not have to poke him all the time.

This also meant that Charlie had to go down to the ICU because the Medications needed to be closely watched. Friday, Saturday and part of Sunday Charlie was on oxygen because of his RSV. 

The Dr. also told us that Charlie will not be on dialysis long because he will need a kidney transplant soon. We had genetic testing done on Tuesday the 22nd and that takes about month to get all of the results back. Once we have the results back we can start looking for a kidney donor and get a transplant as soon as we find a match. Once he gets his transplant he could be in the hospital anywhere from a few days to a month after word depending on how well his body takes the new kidney. In most cases they leave the old kidneys and add the new one but because of Charlie's disease they need to remove both of his kidneys. Something else that we learned is that kidneys do not last forever and Charlie will have to have more then one transplant in his life. 

Monday a week into our hospital stay Charlie had a 1:00 appointment to get his dialysis catheters put in. We were told two different times on Sunday so we were not sure what time it would be but it turned out to be 1:00pm and not 8:00am. 

So Monday morning Charlie's Dr comes in and tells us she wants to put in a PD catheter (the one we chose to do) and they might put in the HD catheter (the one we didn't want) if the PD didn't seal up right away during surgery. We agreed that if the PD didn't seal up right away and couldn't be used right away that the HD could be put in. At this point we thought it would be up to the surgeon on the operating table. Well before the surgery the surgeon came in to talk to us about what he was going to do and he told us he was putting both catheters in. We said wait a second we were told it was only going to be both if the first one didn't seal on the operating table. It was poor communication on Charlie's Dr.s side as it turns out. So Charlie ended up getting both catheters put in. On the down side the one Jeff and I did not want put in was off a little bit and didn't work well, so the Dr.s decided they wanted to fix it because the PD wasn't working fast enough for there liking. We were not a fan of the idea that Charlie might go under again to fix something we didn't want in him in the first place. We ended up getting them to wait till today and they decided Charlie's labs were going in the right direction fast enough that they didn't need to put him under to fix the HD catheter. We were so excited.

Right now Charlie is on manual dialysis till they can get him up to a number that is ok to start using the dialysis machine. He is on 24 hour dialysis to start and they have to do it manually every 30 minutes, because of that we are still in the ICU and will be till charlie can go on the PD dialysis machine. Once he is on the machine we can move to a regular room for our training in PD dialysis. Once we are trained we will be able to go home and start doing dialysis at home. 

Once we are home Charlie will need to be hooked up for dialysis for 12 hours a night, my guess is 8pm-8am.

I hope this up date helps you to understand a little bit of what we are going through right now. I am also due to have a baby in February and Charlie's big sister Natalie is spending a lot of time with her grandparents. 

This is hard on all of us so please don't take it personal if we forget to respond to messages of any sort. 

Thank you everyone for all your prayers and support.

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.

Its Now Almost Mid June!

This June has been very rainy which has been keeping us inside more than I would like to be. It has also given us some time to work on things in the house.

Jeff put trim around the window in the office over the weekend and it looks great! The window was a little tricky to do because it's in the corner but I think Jeff did a great job of figuring out what to do with the trim.

Today my mom is coming over to help paint the trim on the windows in the office, that will be a huge help!

Over the weekend I finished painting Natalie's bed frame. She is really excited about it! She says "is that my pretty, pretty bed?" all the time now.

(her bed frame in the kitchen drying after I painted it)

(Natalie sitting on her bed right after I set it up in her room.)

She has been really enjoying having her bed off the ground.

In the end of May beginning of June we planted our garden. We have a nice variety of plants consisting of rhubarb, horseradish, strawberries, tomatoes, basil, garlic, onions, carrots, potatoes, broccoli, peas, beans, cucumbers, red peppers, jalapeños, lettuce, thyme, rosemary, chives and brussels sprouts. 

(A picture of most of the garden.)

Some of you may be wondering if we still have cows and chickens, the answer is yes we do. The cows are growing up nicely.

(Left to right Prime Rib, George, Fred and Chuck Roast.)

They are so happy that it is Spring/Summer now and they don't have to eat hay any more. They are loving being able to graze on fresh grass/hay all day. They love it so much that they escaped so they could get to the tall stuff on the other side of the fence the other day.

The chickens are busy laying eggs and are also enjoying roaming Jeff's parents farm. Right now we have 2 roosters and about 20 hens, we have a variety of breeds that all lay different shades of brown eggs. They spend most of their time in the barn by the cows or in the pasture by the cows. Every day is like an Easter egg hunt because the hens like to change up their laying spots all the time. 

They love being by the cows!

Jeff made me some nest boxes for Mothers Day this year and its so fun when I find eggs in them.

Natalie and Charlie are keeping me as busy as ever with art projects, toys, outside stuff and visiting different farms every other day. Just about every morning we go and do farm chores at Jeff's parents since 1/2 of the animals are ours (some day we will have our own farm). 

Then my good friend and riding instructor Carly works at the horse barn that I ride at. Natalie loves to see Carly and all the horses especially Carly's horses. Tilly is Natalie's favorite of Carly's 3 horses, Tilly loves Natalie too. 

Then about once a week or so we try to make it to my other good friend Melanie's farm to visit with her and her girls, she also has 29 baby goats that need to be bottle fed right now and that is just so much cuteness all bunched together. She has many other animals but I only have recent pictures of the baby goats.

Thanks for reading! 

Keep checking for more blog posts I will try and be better about posting about my life over the summer.

Horses!

I have been taking horseback riding lessons for a little while now, and it is the best! I would recommend lessons for anyone who is interested in horses no matter what your age. My lessons are every Monday night at 6 pm with Carly the best instructor I could have asked for. 

I ride her horse Tilly.

 Tilly is a 12 year old paint, 

Carly also owns Tilly's daughter Tulip and if I remember correctly Tulip is 7 almost 8 years old. She is also a paint. 

Then Carly also owns a little mini horse named Brutus ;he isn't even 2 yet. 

I think Brutus is so cute! When he is older Carly is going to train him to pull a cart.

On the day of my first lesson I was so excited for many reasons! 

First, I was excited about finally being able to take riding lessons at the age of 28.

Second, I was so excited that I get to ride Tilly because paints are my favorite kind of horse.

Third, I was really excited at how nice everyone one was at the barn especially Carly.

Last but not least, I was very excited to be getting out of the house, because if you know me you know that I'm home a lot during the week.

On my first lesson I learned how to groom a horse! 

it was very exciting for me, since I had never done it before. I even learned how to pick the dirt out of a horses hoof!

I was very excited because I want to learn all about taking care of horses as well as how to ride them, since my ultimate goal is to own some horses of my own. 

I would say that so far the hardest thing I have learned so far is posting. If you don't know what posting is its how you ride your horse when it trots. 

Let me tell you there is a lot to remember! 

You need to keep your heels down, ankles relaxed, knees and thighs out so you don't grip the horse with your upper legs. Then you need to use your calf muscles against the horse for keeping it going and I'm sure something else but I can't remember. Then your ankles need to be under your hips and your hips under your shoulder. You need to relax your hips and pull your belly button in towards your spine and you have to let your body move with the horse using the energy from the hind leg on the outside of the direction your moving in (it doesn't matter what leg you use if your going in a strait line) and when your posting you go up and down in the saddle. If you do it right it doesn't feel weird and is easy to do but learning to do it right is a lot to remember.

 I'm sure I forgot something in my description of posting. I'm still learning!

You have to remember all that and then you need to be able to tell the horse where to go. 

Horseback riding lessons are one of the best things I have done! 

(aside from my family of course)

I can't wait till the day that I can get a horse of my own!

I would have never met Carly if it wasn't for Gina and Cheryl! 

Thank you Gina and Cheryl!

Some Future Plans!

We are fixing up our house so we can sell it and buy a farm of our own. We won't know until our house is ready to sell if we will be buying land and building a house or if we will buy an old farm and fix it up or if we will buy land with the out buildings and build a house but we do know that its not likely that we will be buying move in ready place. I would like at least 15 acres but ideally I would like 25-50 acres. For the land I would really like to have some woods ideally with oak and maple trees, But I will take any kind of trees, a small creek running trough it and then pasture for the animals. 

 Our goal is to finish some inside projects from now until spring, then we will finish up scraping and painting the outside of our house and garage. After thats done we are going to remodel our laundry room/ mud room. Then we will remodel the bathroom, and lastly the kitchen! We have some smaller projects but thats all our big projects... Our time line is to get all of that done from now till the summer of 2014. Once the house is done we will either put our house on the market right away or live in it another year to try and pay off student loans.

Once we move and are settled in we will start getting our animals! If you know me you know that I want lots of animals around. Right now we have 2 dogs that will move with us. Then we have chickens and cows at Jeff's parents but depending on when we move the cows may already be gone to the freezer. Let me tell you my vision! We will have hens for eggs and then we will raise some for meat. I would really like to have a turkey or two for Thanksgiving dinner. I may get some ducks so my dad can get duck eggs from me (my dad gets then from my good friends farm right now). I want sheep for wool and meat. I would really like to learn to spin wool into yarn so I can knit things from my own sheep. Then we have the cows! I would like at least one dairy cow so I can make butter, cheese, ice cream and then have milk and cream for the house. then I would like to have a heard of beef cattle. Next we would like to have a pig or two for meat. We may have a few goats but I'm not sure what I would use them for. I just think they are such fun animals! We will add to our dogs maybe get a barn cat or two and then I would really like to get 2 horses for riding and maybe for work also. I know if we live with some woods I will teach the horses to pull logs out of the woods for me.

Then I want big gardens! 

I would really like to be food self sufficient, if there is extra food I might consider doing a csa or selling at a farmers market with all my extra time. But my goal is to grow and preserve a years worth of food, I will buy things that don't grow in Minnesota but if it grows here I want to grow it. 

We have big dreams but we are working to make them a reality.  

P.S. I'm sorry I haven't posted any new blogs in a while. I will try and be better about it.

I love November!

 There are so many reasons that I love November! I thought that I would share on why I think that November is one of the best months of the year.

Every year at the beginning of November is our annual family vacation up to the shack for a week of deer hunting. I haven't ever shot a deer but I really enjoy sitting in a deer stand watching nature for hours at a time. I really hope that I get a deer before I'm 30 though.

Then around the time deer hunting is over Egg Nog comes out in the stores! I love Egg Nog!

Then its time to start getting ready for Thanksgiving. Thanksgiving is one of my favorite holidays! I love all of the food and getting together with family and reflecting on all that I have to be thankful for.

Sometimes we get the first snow that stays on the ground in November.

After Thanksgiving we can start getting the house ready for Christmas!

Whats your favorite month and why?

Recent Knitting Projects

So I have a few Knitting projects I have been working on and would like to share.

Here is a little sack and hat I made for my newest nephew Lucas. 

He was born 10-21-12

The hat is the "Trendy Baby Hat" on Ravelry and the sack is the "Laural Love Cocoon".

All the patterns will be on Ravelry 

I made this hat for Charlie! I used extra yarn that I had and knit it up in an afternoon. the pattern I used is "Scandihoovian Hat" It is a very easy knit and very cute! It was my first hat that I knitted from the top down, its also my first hat with ear flaps.

I made these mittens for my friends little girl. I used the the "Give A Hoot" pattern but to make it kid sized I used size 3 needles. 

 I made hat and mittens for Natalie.

The mittens are the same "Give A Hoot" pattern and then hat I'm not sure if its on Ravelry or not but I got it out of a book "Holiday Knits" by Sarah Lucas and Allison Isaacs its called "Striped Stocking Caps" on page 63 of the book.

I'm also working on a sweater for Natalie that should be done before Christmas! 

If your wondering about Ravelry.com its a free web site that you have to sign up for but you can find thousands of knitting or crochet patterns on the site. Some are free and some cost money and its the only site of its kind that doesn't send you tons of e-mails once you sign up.