The best way to help yourself...

....is to help others. Am I right? I don't know about you but anytime I have had a pity party for myself or my son it has never made me feel better. The times that I feel we can conquer this disease and get through the days are when we are focusing on helping others.... and that's exactly what we have been doing. I'd be lying if I said that this disease hasn't gotten me down the last few months. It has. But more so it's had Greysen in tears more days than I can count. It's getting to him. The daily irrigation's, the emotional toil of being so young yet being so brave. He endures a lot and we have tried very hard to not make him feel entitled. Yet at some point we have to confront the issue with him that YES this sucks and YES its unfair but lets make the most out of it. Feeling sorry for ourselves gets us nowhere, and in a sense lets this disease win. Its taken a lot from him but I won't let it take the things that are in our control!

So..... what have we been doing? For starters, Greysen and I decided that we wanted to raise some money to buy iPads for kids like him. When you have to do daily enemas you NEED a distraction. It takes 1-2 hours and (if it were me and I'm SO glad it isn't)  I definitely would need a distraction when that tube is going you know where. We set up a fundraiser to raise $1500 and within 6 hours we reached our goal! 6 HOURS! The support that Greysen felt, and his excitement, was unbelievable. People continued to give so generously that we made it past our goal! So far we have been able to buy 9 iPads! Greysen is so excited for the iPads to arrive in the mail. Each ipad already has a designated home so we will be sending them to their lucky recipients soon. The kids receiving them are all part of a support group that I started on facebook which leads me to my next project....

After being a part of several facebook support groups I decided that we needed one specifically for parents of older kids with HD. All of the groups are so helpful and beneficial but specifically I wanted one where people could come ask questions geared toward our older children. Having a baby with Hirschsprungs is so much different than having a school aged child with it! So now the group is up to about 140 people from all over the world. This group (along with the others) are my HD family. When I'm secretly crying or struggling with something I can go on there and know they will understand, love, and support me. They are such a blessing!

I only know of 2 other people in Montana with Hirschsprungs disease. One is a 14 year old and the other is my dear friend Mandy's son, Samuel (10-ish months?). After starting the facebook group I realized that if Greysen could connect with other kids his age just like him, then maybe he would feel the same support like I do from the HD moms! So I started a program called "HD Buddies". It's a pen pal program where people can email me their information and then get matched with a child of similar age, gender, etc. They are then able to connect on a more personal level and can get letters and photos the old fashioned way;) I've had so much response! Even parents of babies are participating. I hope this program forms support and friendships that will last a lifetime:)

So there you have it! Fighting an unseen battle can be so draining but what we learn from it can be used to help others! Treat others with patience and dignity because you never know what they are going through. And most of all don't feel sorry for yourself! There is always someone who has it way worse than you:)

Here is a video of Greysen explaining "Wishy Washy Time" in his own words and then asking people to donate money for the iPads:) Ignore his half cut-off head...its my first Imovie and I couldn't figure out how to fix it haha......I am so proud of this boy!

Greysen's Wishy Washy Video!

Biopsy Day!

April 26th finally arrived! For the last 4 weeks we had been doing rectal irrigation's everyday so that Greysen would stay healthy and his colon could hopefully not get as full as it had been. Greysen spent two days before his procedure on a clear liquid diet and lots of laxatives. I was surprised at how well it worked this time! Rewind to the month before when Greysen had to prep for his barium enema he had to follow a clear liquid diet and laxative schedule until everything in his system came out clear. Here is how its SUPPOSED to work:

8am 1 square of ex-lax
9am 1 square of ex-lax
Every half hour after 9am 1 full capful of miralax until you get results

We stuck with the schedule and gave him lots of popsicles and clear liquids. Then we waited, and waited, and waited.....and waited some more for him to go running to the bathroom. Nothing. The doctor told me that 1 square of ex-lax will send an adult running to the bathroom! At about 4 pm I decided to call the on-call specialist. The nurse told me to just keep giving him the Miralax and it would eventually work. So I did that and at about 9pm he went a tiny bit. At this point I had given him half a bottle of Miralax! I just kept thinking "This cannot even be possible!" The Next morning I called the nurse again and she told me to start the whole schedule again for the day. At this point I just thought he was going to explode. The poor guy was only supposed to go without food for a day and now we had to keep going. By the end of Sunday night I had officially given him 1 full large bottle of Miralax and 7 ex-lax squares. Now that I think about it I should have demanded that they clean him out in the hospital because in his condition that was dangerous and ridiculous! By 9 pm that night he had finally gone to the bathroom but he never got fully cleaned out for his procedure even after all of that. This was my first clue that something was extremely wrong with him and this was more than just chronic constipation.

Fast forward to April 26th, here we were in the waiting room of the surgery center, bowels prepped in a day, and ready to get some answers. Greysen was extremely nervous as this was his first time ever getting put under. Dr. Flass came in and explained the entire procedure to Greysen and even asked him if he wanted his stuffed monkey to get a scope in his butt as well hahaha. We LOVE doctor Flass! He had never had an IV either and luckily they were able to put him to sleep before putting his IV in. The entire procedure took about an hour and a half. Dr.Flass performed the sigmoidoscopy and then a surgeon came in and took 5 biopsies from through out his colon. Dr. Flass wanted to be sure that enough biopsies were taken because there is no way of physically seeing where there are or aren't nerves! After the procedure they came out and showed us the pictures of the sigmoidoscopy which looked pretty good except for a lot of wrinkles in his intestine due to the stretching. There were no signs of inflammation or an allergy so they told us we would have to wait until about Monday or Tuesday to get the results of the biopsy.

We took Greysen home for a day of recovery and he was never so happy to be able to eat again! And since his scope showed no signs of an allergy he was finally able to eat a regular diet and not dairy free! I wish I could remember what we let him! It was probably McDonald's! LOL

My prayer at this point was "Lord please let it be Hirschsprung's because if it isn't I cannot handle more questions!" I needed an answer and not more questions...

Almost an answer...

About a week after our first visit with Doctor Flass we got a call from the nurse. Greysen's blood work came back negative for Celiac's but his Sed rate was a little elevated. She explained that it meant he could have an infection/inflammation somewhere or just be on the verge of getting sick. His numbers weren't too high so the Doctor wasn't worried.

The Doctor called later that day with the Sitz Study Results. He told me that Greysen definitely had some type of motility disorder because ALL the markers were still in his colon. To give you an idea of how crazy this is I will explain how it works. On day 1 Greysen swallows 24 circle shapes in a pill. 6-12 hours later those shapes should be travelling through his colon and within 24 hours they should be completely out of his body. On day 2 he does the same thing except the shape is a semi circle. Day 3 is the same thing except this time the shape is a Mercedes symbol. They do this to time how the body is digesting. On day 4 they take an x-ray to see where the shapes are at within the colon. A normal person would have no circles or semi circles in their system and the Mercedes shapes would be very low in the colon almost on their way out. Greysen's test showed ALL of the markers still in his colon! The doctor kept asking if we were sure we gave him the shapes in the correct order because there were some circles that hadn't even moved and then some semi circles were in front of the circles when they should have been behind . They were all mixed up! A normal colon would digest the shapes in the order they were swallowed!

When I got off the phone I immediately started googling motility disorders. The first one that I saw was Hirshsprung's disease. The symptoms were: Not passing meconium within 24-48 hours of birth, spitting up green bile, projectile vomitting, and much more. Greysen had had every single symptom. I showed my husband and didn't wanna jump to my own diagnosis but I was almost positive that Greysen had this disease.

On March 22, Greysen had the Barium Xray done. We had to wait over the weekend to get the results. FYI if you have to schedule any kinds of tests don't do it on Fridays because you will have to wait until Monday to get the results!

That Monday we went to Dr. Flass's office to talk about all of the results from the X-rays and blood work. As if the Sitz test results weren't crazy enough he showed us a picture of Greysens colon from the barium x-ray. This is what it looked like:

That huge kidney bean shaped balloon should be the size of a small tube. This is what they call a megacolon. Dr. Flass said he has only seen one other child with a colon this big. He estimated that it was 4 times the size it should have been! At this point I decided to mention the idea of Hirschsprung's. Dr. Flass immediately agreed that we needed to do some further testing to rule out Hirschsprung's. The thing about Hirschsprung's is that kids are usually diagnosed as a newborn and it is rare to be diagnosed so late because left untreated it can be fatal due to the picture above. After 6 years of his colon stretching this far it should have burst!!! God was watching over our son! 

The next step would be to schedule a sigmoidoscopy and a biopsy of his colon and rectum as soon as possible. The sigmoidoscopy would look closer at his colon to see if there was any inflammation (from a possible allergy). The biopsy would tell us if there were nerves present in his colon (Hirschsprung's is an absence of nerves). The soonest we could schedule the biopsy was April 26. I was due May 9th with our 4th baby and my original due date was supposed to be April 24th so I was very concerned that we would be having a baby at the same time! I just wanted to be sure that no matter what Greysen would make it to that appointment because we needed answers!

 

Dr.Flass

It's been awhile since I've blogged Greysens story so if you need to catch up here is where I last left off:)

Dr. Flass

In March of 2013 we made our way to Dr. Flass's office. It was just Greysen and I....and my novel of notes. I was determined that if we were gonna see a specialist, no matter how crazy I seemed, I was going to tell him every detail of the last 5 1/2 years. I didn't wanna miss a single detail that may be pertinent to a possible diagnosis or an answer to whatever it was that was causing my son to have an awful time pooping. I was really nervous that Dr. Flass was going to be a conceited know it all Doctor and I can remember asking God, "Please just let him listen and please help me feel comfortable talking to him."

When we arrived we checked in at the front desk and low and behold the receptionist was a friend of ours from church. This alone made me feel so much more at ease and comfortable.We waited in the waiting room until a friendly nurse called for Greysen. At this point I was feeling great because the staff was so nice and friendly. I'm a firm believer that a good doctor will have a friendly staff and a friendly staff works for a good Doctor:)

Once in the room, they took Greysens vitals, asked a few questions, then told us the Doctor would be right in. At this point my heart was racing and I was afraid I was going to forget all of my questions (Good thing I had them all written down! A full page of them haha). As soon as Dr. Flass came in I immediately felt comfortable by his presence. He was young looking, super friendly, and talked to me like a normal person! I really could not have asked for a better Doctor. He sat and listened to all of my concerns and never once made me feel rushed. He actually LISTENED. Most Doctors I have come across already have the answer before you ever have the chance to talk about the problem. Not only did he listen but this was the first Doctor to come up with a plan. He wrote down 4 steps he was going to take to try to figure out what was wrong.

#1 Do a Sitz Marker Study and a Gastrografin Enema . Until this point the only x-ray Greysen had ever had was when he was 1 day old. Not even when we had seen the specialist at 18 months. Such a simple step that could have given us a clue a lot sooner. This explains a Sitz Marker study and this explains a Barium Enema Xray. Greysen thought the sitz marker study was cool because he got to swallow plastic shapes!

 #2 Draw some blood and test for Celiac's Disease. I was pretty sure this wasn't the case but I was happy to let them test for anything. 

#3 Do a full bowel clean-out after all the xrays to be sure we were starting with a completely cleaned out colon.

#4 Rule-out an allergy by starting with Dairy. Greysen had to go 3 weeks on a dairy free diet. If you've ever had to do this Im so sorry. Its expensive and extremely difficult. There is dairy in EVERYTHING. Its in caramel colorings which happen to be in Red Robin French Fries. Its literally in things that you would have no idea! And then add in the fact that people in random places just hand your kids treats without asking. For three weeks I was a nut. I'm so thankful for our family that helped with the cost by buying him almond milk, yogurts, and coconut ice cream. The biggest help was when Greysen's Aunt Shani looked up some special recipes and made some things just for him. She filled the freezer with homemade pizza pockets, pretzels, and chocolate chip cookies. It meant so much to us but especially to Greysen......FYI vegan cheese is absolutely disgusting!

Before we left the office Greysen got his blood drawn for the first time. Getting your 5 year olds blood drawn is not fun. Poor guy had to be held down and bribed but they did finally get some blood. They gave him an awesome toy when we left. So now Greysen just had to wait a few days for the xrays and wait on the blood work to come back.....

Bowel management week!

I don't have a ton of time to write a whole blog about this but I wanted to give everyone an update and ask for your prayers. 

We just got done with 2.5 hours worth of appointments.

The doctor thinks the Castile soap we are using for washouts is causing Greysen to vomit. This is good news and bad news. The good news is that we can maybe stop the vomiting. The bad news is we have to go back to using Gylcerin which I refer to as liquid gold because it's extremely expensive and isn't covered under insurance. Unfortunate but neccesary. 

The second problem is that despite several washouts per day (and for those wondering, washouts are enemas but I really just hate that word. Can you blame me?) Greysens bowels are not getting clean. The x-ray this morning showed he still had a lot of stool in there and we need this completely cleaned out so that the doctors can help start managing his accidents. It would be best if he could be completely cleaned out by today since we only have tomorrow and Wednesday left with the doctors. 

Another problem is Greysen's appetite. It has decreased significantly over the last few months and has pretty much gone to nothing since we got here. He hasn't eaten breakfast or lunch today and says he can't eat:( I don't know if it's because of the washouts and vomiting but I'm hoping it gets better...soon!

Despite the washouts Greysen is still having accidents. Not quite as bad as before but the goal is to stop all accidents. If we can get him cleaned out then the doctors can figure out what is causing the accidents and how to better treat them. It's all a trial and error process but being completely empty would eliminate some questions.

We met with Grey's surgeon on Friday and the great news is that he doesn't think Greysen has a stricture! That was our main concern. Praise God! He talked with us about our treatment plan and recommended we do the bowel management program for 10 months. This means a washout once a day for the next 10 months. I'm sure it will become normal for us but it will be an adjustment. It's about an hour process and has to be done at the same time every night. Next June we will come back and discuss his progress and they may give him Botox injections then if he is still having issues. In the meantime I am just going to be praying this works!

So that's all I have for you right now. We appreciate all your prayers and I hope this update gives you an idea of what to be praying for! Right now we are enjoying our time together in Denver but I am really missing Kyle, the kids, our new home and church family! If you feel up to it leave me a comment so I know who is reading and praying! Your support means the world to us!

Surprises...

Anytime we have made the trip to Denver Children's hospital I am always amazed at how much they give away to the kids and families. I can't even begin to name all the things Greysen got but I will try: handmade quilt, handmade fleece blanket, handmade pillow case, a joy jar filled with toys, Lego sets, toy truck, stuffed animals, ironman costume, transformers...seriously the list goes on. The even greater thing is that all of those items were donated by people. 

I love people that love to give. 

If you've ever stayed at a Ronald McDonald house you will appreciate people that give. 

If you've ever had a child in the hospital for a lengthy time you will appreciate people that give.

2 days ago I got a phone call from the hospital in Denver. The woman on the phone asked where we would be staying during Greysens week long treatment and I told her we would try to stay at the Ronald McDonald house. It's $25 per night and our insurance will cover $20 per night so that comes out to $5 per night out of our own pocket. Big spenders I know! The problem with the RM house is that you cannot make reservations but instead have to call the morning of the day you plan to get there and see if there are rooms available. If nothing is open then you are out of luck and can try again the next morning. 

The woman on the phone informed me not to worry about my lodging because the hospital has a donor that would like to pay for our hotel and anyone else in the bowel management program! She asked if a queen suite was ok and then made the reservation for me. I really couldn't believe what I was hearing! 

This is a HuGE blessing for Greysen and I! I had looked into staying at this hotel but knew there was no way we could afford It. We also will not need a vehicle now because we can walk right across the street to the hospital. It's also right next to panera where I will be eating dinner every night:) 

God is watching out for us...

Greysen went on his first plane ride today and loved it! At first they had put us in completely different rows which upset me at first. It was his first time flying and I wanted to be sitting next to him! Some wonderful man switched me seats so I could be next to my son:) On our second flight we had an aisle seat and a middle seat. Greysen wanted to be by the window but since the flight was completely full I knew it wouldn't be possible. Well, everyone got on the plane and guess which seat was the only open seat on the plane???

God is so good to us even in the little things. He uses people to bless others and gives us the desires of our heart, even if its asking for the window seat on a plane:) 

I hope that I can use what the Lord has given us to bless others in the same way I have been blessed by the people that give to The Denver Children's hospital. Please keep Greysen in your prayers this week as he begins the bowel management program tomorrow and has to endure some not fun things. I am praying for complete healing or at least an improvement in his healing from his last surgery and a better quality of life before he starts school. Thanks everyone for reading and keeping us in your thoughts! 

                        First flight!

So here's the deal...

Life is crazy right now. Crazy in a good way but none the less crazy. Right now our entire life is boxed up and ready to be moved in 2 days! In the midst of my husband changing jobs and moving we have to plan a trip to Denver. After a lot of thought we decided it would be best for Greysen and I to fly down this time around. I thought that would make things easier but nothing is easy when it comes to dealing with insurance. I called to be sure everything was pre-approved and Denver Children's assured me they would handle it. We'll I wanted to buy our plane tickets but couldn't because I wasn't 100% sure that Greysens treatment would be covered. I have been on the phone everyday with them for the last week because Denver would tell me one thing and the insurance would tell me the opposite. I was so frustrated and tired of being on the phone (I really dislike talking on the phone) especially when I had been on the phone cancelling and switching utilities, reserving a moving truck, making rent arrangements, the phone calls we're never ending! To make a long story short I finally got the approval for Greysens treatment and Greysen will get his first plane ride in just a few short weeks. It's a good thing i made the calls because Denver called me back to apologize and didn't realize our insurance worked differently. I was really stressed that his insurance wouldn't cover the week long program so I was trying to figure out how we were gonna pay for it, because insurance or not, he needed to go. I'm glad that's one less thing to worry about. Everything seems to be falling into place and we appreciate any and all prayers. Going back to Denver is going to be great for Greysen. He has  been having a tough time lately and I am noticing more and more the emotional affect it is having on him. He could really use some prayers right now especially as he transitions to a new city, new school, and new friends. The other day Greysen was having a rough time and with tears in his eyes asked me, "Why did God make me this way?" That's a tough question but I was immediately reminded about the blind man in John 9 where the disciples ask Jesus who sinned to make this man blind, him or his parents and Jesus responds with, "Neither this man nor his parents sinned. This happened so that the work of God might be displayed in his life." That is my prayer thru all of this that Greysen will use his experience and struggles with this rare disease so others may see the work of God thru him! I know that God has a very special future for our boy:)