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:)

The one minute bladder

In December of 2012, just 2 months after we took Greysen out of school, I noticed he was running to use the bathroom quite frequently. I started to wonder if maybe he had a bladder infection or a uti but he didn't have a fever or any other sysmptoms. You wouldn't know it by how much we visit the doctor now but I really don't take the kids to the doctor unless they have plenty of symptoms that warrant a trip there. I gave it a couple weeks but decided I better take him in. Our doctor wasn't available and the only other opening was with Doctor Jagodzinski whom we had never seen so I relunctantly made the appointment. We got to the doctor and I explained to the nurse that Greysen had been having frequent urination but no other symptoms. The doctor came in and examined him and said that his urine tested negative for any bacteria. She wasn't sure what was causing it but that sometimes little boys can have problems with bladder control. The thing was, Greysen had never had a problem with his bladder before. That was the part that DID work so I was actually concerned that out of no where he would use the bathroom, flush, then immediately go again. I even timed it once because I thought maybe I was crazy but nope, every 1-2 minutes he was going! I really liked this Dr. Jag because she was very thorough, didn't rush, and seemed like she actually cared. She asked if I had anymore concerns and I began to explain Greysens history of constipation. I told her that we had been trying the miralax and now that he was having bladder issues I felt like more investigating needed to be done. She felt on his tummy and could feel a large amount of stool and explained that maybe the constipation was now interferring with his bladder. I felt so bad for my boy. It seemed like his issues kept getting worse but I knew that now was the time to finally get to the bottom of this before he was in school. At this point I had had enough. I knew we needed an answer and that meant me being aggressive. Even though we had seen a specialist a few years back (remember the crazy bird lady??) she told me it was probably time to see one again. She explained that a new pediatric gastroenterologist had been in Billings 6 months and he was very good. I felt relieved. Finally, maybe someone will listen? She gave us the referral and the appointment was set for March. It was the longest 3 months of my life but it gave me time to write up Greysens history and get my questions written down. I was not willing to see a specialist again unless he actually listened to my concerns and acknowledged this was an issue bigger than constipation. I wasn't going to see a specialist again that had no plan of action and wasn't willing to do some homework to diagnose my son. We HAD to figure out what was wrong with Greysen...it just wasn't an option anymore.

Denver Bound...

We took Greysen to see Dr. Flass today and the good news is his stricture doesn't feel as tight as it was 2 months ago. The bad news? We don't know what is causing his incontinence. More bad news? This means a trip back to Denver:(

This week Greysen will do another Sitz Marker study to check his motilty. The test basically measures how fast your food is digested. This is done by swallowing several plastic shapes "markers" at the same time everyday for 3 days. On the 4th day, an x-ray is taken to determine where the markers are at in the colon and if they are moving thru at a normal pace. Its a pretty cool test plus Greysen gets to eat plastic shapes. Life doesn't get much better than that, right?! He did this test last year before he was diagnosed and the shapes that should have cleared out of his colon within 6 hours had barely moved anywhere after 4 days!!! It will be interesting to see how much better he does this time and, even if his motility is slow, I know it won't be as slow as last time!

Dr. Flass told us that even though Greysen has improved since having the Pull-thru surgery, he hasn't improved as much as he would have hoped. There isn't the technology here in Billings to be able to test the things that need to be tested so he is going to talk to Greysen’s surgeon in Denver and try to coordinate a post-op follow-up along with some other tests. He is also going to see if Greysen can get into the bowel management program. This is good news for us as I have been struggling with Greysen’s day to day issues in not knowing how to help him. A few options may be to place a cecostomy. This is a tube that is put in through the skin and goes into the intestines. It is basically a way to easily flush out the bowels everyday without having to use laxatives, enemas, etc. It’s more effective in keeping the bowels cleaned out and can help with incontinence. This would be a better option than having to go back to a colostomy. They may also use anorectal manometry to be sure his nerves and muscles are working correctly. Hopefully, I will hear back from Dr. Flass today after he talks with the doctors in Denver and we can see what they want us to do. So I guess for now we just wait until we know what the plan is and of course I will update you all once we know! We appreciate all your comments and encouragement on our blog. It’s great to know who is praying for us and thinking of us during this crazy time! As I’ve mentioned before Kyle is making a job change in July and will be the associate/family pastor at Big Timber evangelical!  We are SO excited about this new opportunity but it is a lot to think about selling our home, moving, and transitioning our family, all while dealing with Greysen’s health issues.

If you’d like to pray for us here are some specific requests:

·         That we would be able to get into Denver Children’s Hospital in June or July before Kyle starts his new job.

·         Pray that Greysen would not be anxious about the doctor’s visits or about the move.

·         That Doctors would be able to find the problem and get Greysen to a better  place of healing and recovery

·         That our house would sell fast so we don’t have to be dealing with a sale in the middle of going to Denver.

Kindergarten

In the summer of 2012 I took Greysen to his 5 year check up and wanted him to get his kindergarten shots because we were thinking of sending him to kindergarten. He is a July birthday so he would be a young 5 year old but we felt he was ready (besides the fact that he still could not poop on his own). I took him to the visit and explained to the doctor that he was still having issues. The doctor assured me that constipation in kids is very common and that he would eventually outgrow it despite the fact that we had been dealing with this for 5 years. The doctor explained to me that we needed to do a clean out at home and this would give his colon a "fresh" start and from there we would give him miralax everyday and get him on a good bathroom routine/schedule. The cleanout was supposed to go something like this: one dose of Ex-lax everyday until results. By day 3 I called the doctor because I was concerned that still nothing had come out and I wondered how long I was supposed to give him the ex-lax. The doctor said to just keep giving it to him until he pooped so I did. By day 7 I started to really worry because at this point I felt like I was poisoning my son. What goes in must come out right?! So where was it and why wasn't it coming out?! I remember asking Kyle several times, "how is it possible that a child can have 7 adult doses of ex-lax and still nothing is coming out??! Finally, we got him cleared after 8 days! We started the regimen of miralax and I was pleasantly surprised at how well it seemed to be working. I was also glad for a laxative that is safe and not absorbed into the body. You know the warnings on laxatives say do not use for more than 7 days? This apparently does not apply in Greysens case. Anyways, as long as we didn't miss a day he seemed to be staying very regular and it seemed like things were starting to get better. The only problem was that as soon as we missed one day of giving him the miralax we would be back to square one. This is the problem with short segment Hirschsprung's disease... it can be manageable at times but then at other times it can be a disaster. It's why I would call and schedule an appointment for him to see the doctor but then think he was getting better so I would cancel the appointment. The other problem was that we had very bad insurance. It was hard for me to keep an appointment that I knew I would have to pay $130 just for the doctor to tell me to go home and give him miralax or ex-lax. I can get that kind of advice on the internet for free! Most people will ask "Isn't your son's health worth any amount of money?" Had I known at the time that something was wrong with him I would say yes but at the time every doctors visit would end in the doctor telling me he was just constipated and that he would outgrow it. Its hard to convince a doctor that something isnt right with your child and I wasn't willing to keep paying them to do nothing. Finally, we were able to apply for healthy Montana kids which is an insurance for middle class families. The income limit for our family is $75,000 dollars in which my husband responds, " I will be happy the day we don't qualify because that means we are making at least $75,000". He is funny and even more funny because he knows that he is a pastor and you dont go into that kind of job for the money:) Anyways, after we got the insurance it only cost us $3 to see the doctor which to me didn't even seem fair. After paying $130 per visit $3 seemed like theft! I'm not sure if this was the right attitude but I started taking Greysen to the doctor a lot after that because I figured it was basically free and maybe if I took him enough they would finally do something! They kept us on the miralx regimen and said to come back in a few months if it wasn't better. Of course some weeks it was better and some weeks it wasn't so September came and we decided to send Greysen to Kindergarten.

We were already concerned about sending Greysen to Kindergarten because of his age but it concerned me even more that he was 5 years old and still could not poop on his own. For whatever reason in Billings, MT  "Red Shirting" is a common practice. I really didn't wanna wait another year to send Greysen. I assumed he would be a tad younger than some of the kids but I never imagined most of them would be 6, even 7 years old! Talk about red shirting to the extreme. I was a bit annoyed because while he was doing great for his age he was actually doing below average compared to the rest of his class.
You can't blame a 5 year old for not keeping up with 6-7 year olds! So after a month of school we decided (with many tears) that we would take him out and wait until the next year. Kyle and I both prayed about it and knew its what we needed to do. We felt very secure in our decision but it still didn't make it easy. I remember telling the Lord, "I know that one day we will look back and be glad we had the wisdom to make this decision." Little did I know that would only be 7 months later...

A More Recent Update

Hey everyone! I know that I have been blogging Greysens story from the beginning and I wanna do this so that others dealing with Hirschsprungs can follow and compare our story to theirs. Each case of hirscsprungs is unique to that individual but sometimes it is nice to read similar scenarios or to see that someone else has dealt with some of the same things. However, I thought I better give you all a more recent update!

Greysen is now 7 months post-op from his pull-thru surgery. While he is doing much better than he was before the surgery he is now dealing with a whole new set of issues. The misconception with having surgery is that he is fixed and does not have hirschsprungs disease. From the words of his specialist, "once hirschsprungs always hirschsprungs." He will never be cured and I have come to terms with this however there are things we can do and are currently trying to do to increase his quality of life.

About a month ago Greysen started physical therapy to help strengthen his pelvic floor. The specialist wanted to try this before sending us back down to Denver. Its a very specialized type of physical therapy, and while I feel it may help a little, I am not convinced this is the cure-all to his issues. After 6 years of not being able to use his bowel muscles correctly its inevitable that these muscles need to be re-trained and reconnect with his brain. Because his intestines could not move the waste through his body to his spinchter his body never had the urge to go. So basically his body has never been trained to hold OR release waste. Another issue that can cause this is called a stricture due to the surgery. The area where his colon was reattached can form scar tissue causing the hole to become to small for anything to pass OR it can cause tension in that area which in turn causes the spinchter muscle to tighten or release (spasm) which then can cause him to either have an  accident (release) or be unable to have a bowel movement (tighten).

7 months after surgery he should not be having accidents. It has been a very hard couple of months trying to decide where to go from here. He is almost 7 years old and the older he gets the more anxious he gets about these issues that he cannot control. I want for him to have a good childhood and I want him to be free of teasing or embarrassment. It is hard to see the time go by and to see no improvement. My heart hurts for him. I hurt for the times he may be embarrassed. I hurt for him feeling that these accidents are his fault. I want him to enjoy a childhood where he doesn't have to worry about such serious things. I'd love to send him to school or a friends house without explaining to them why he has a change of clothes and how to respond in case he does have an accident. I cry picturing him stuck in a bathroom not knowing what to do or who will know. Its an emotionally exhausting disease and I hate it.

We have an appointment next week with the specialist where hopefully we can get the ball rolling. Kyle and I will be requesting a referral back to Denver so that the surgeon can see Greysen and decide where to go from there. Its possible that Dr. Flass may be able to evaluate a possible stricture here in Billings but we will also be requesting that Greysen participates in Denver Children's hospital's bowel management program. It is the best in the country along with one in cincinatti and is used as a model to establish other bowel managment programs around the country. Our hope is that we can get all of this taken care of in July while Kyle is between jobs. In the meantime we are trying to sell our home as well! Transition is never easy for us let alone dealing with a child with "special needs". The one thing that keeps us strong is knowing that we are where God wants us and he is going to work out the details. Our hope is that by the beginning f the school year Greysen will have made a lot of progress and will be able to function like a normal 7 year old and be comfortable at his new school and meet new friends!

In the meantime, I will continue to pray for strength and for wisdom to raise our son in a way that makes him feel normal, loved, and accepted. We appreciate everyone that follows Greysens story and holds us up in prayer!

God can use poop...

Continuing from here

The next 2-3 years were kind of a blur. We used enemas once a week to get Greysen to poop.We kind of, without realizing it, had a system to get him to go. Sometimes I would physically feel his pain and sickness. I just remember thinking, "He has not pooped in 7-10 days this MUST be poisoning his little body." It would make me frustrated and cry. Part me thinks it was my sense of urgency to literally get that crap out of him that kept him alive. I would do whatever it took. I would sit for hours on the bathroom floor while he tried as hard as he could. I would have to coach him through it every few minutes like a husband coaching a wife pushing a baby out. At one point he pooped and then immediately vomited everywhere. I kept telling Kyle, "I think he has a blockage." Sometimes he would even shake afterwards and be very cold. I can't even type this without crying. My heart just hurts for everything he went through but also because he could have died...should have died. I now know that enterocolitis is a huge risk factor in kids with Hirschsprungs disease and these symptoms are exactly what he had on more than one occasion. When you have waste built up for so long and then it is released suddenly, the bacteria enter into your blood and that is why you vomit and get very sick. It is truly hard to believe he didn't die. That may sound dramatic but it is the truth. It is more than gut wrenching to watch your son be so sick and not be able to help him.

Today is Good Friday and I can't help but sit here, as I type this, and wonder, "Is this a glimpse of how God felt as he watched his Son suffer on the cross?" He sent his one and only Son to die for us. For people that would choose to reject him and hate him. He knew and knows that not everyone will accept him yet he still sent his one and only son to die for us! I know that some people may say, "If God is so great then why did he let your son suffer?" I say, "God is so great he SAVED my son from suffering... He saved him from eternal suffering." There are things in life that seem unbearable, unfair, and unjust. Its part of life. We live in a sinful world but its through those trials and situations that, if we look to God, we can see him working, protecting, and shaping us. I would have never asked for my son to have Hirschsprungs but there are invaluable lessons I have learned through it and hope that he will too. As he grows older, I hope that he can be a beacon of light and hope in this world. If God can use POOP to teach us lessons then he can do anything! If we look for the good in things we will find him. If we listen for him we will hear him. He is there. He is everywhere. And just in case you didn't know it...he loves you. I hope that this blog encourages you and brings a little hope to any of my readers. I'd also love to be praying for my Hirschsprung's family readers. Leave me a comment with any prayer requests! And if you don't believe in God that is okay too but I would love to still pray for you and your son or daughter. Thanks for reading today! I hope you have an extra special Easter weekend!
  

My superhero

The not-so-special specialist

I'm continuing Greysen's story from here...

At 18 months old, Greysen was referred to a G.I specialist in Billings, Dr. Ofelia Marin. The first thing that should have clued me in was the HUGE parrot cage in her office. I'm not sure why, but it seemed a little odd to me that you would have an animal in a doctors office where people with lots of allergies and medical issues come to visit. #2 was her foreign accent. I love a good accent but when it comes to discussing medical things where the language can already be confusing, then you add in an accent that I can't understand, the two just don't mix. And lastly, she was just a bad doctor. She rushed us through Greysen's history, gave him a rectal exam in a very rough manner, then charged us $300 to tell us he just needed more fiber. At the time, we had insurance but the deductible was high so we basically paid full cost for every visit. I remember feeling frustrated because we didn't have the money to keep taking him back just to tell us nothing was wrong. I'm not sure if other people have dealt with a husband who is upset they just spent $300 for nothing and a wife who knows something is wrong even though the doctors say he is fine. What is a mom to do?!

We left her office feeling a little hopeful that MAYBE he did just need more fiber. He was supposed to have 20+ grams per day of fiber. This is a difficult task for an 18 month old because they are picky eaters anyways. Most servings of fiber are 2-3 grams in each food item and if you can find a yogurt with 5 grams you are doing good. The doctor sold us some ridiculously expensive high fiber juices that contained 10 grams in each juice box. I think it was $40 for 15 juices. Luckily my parents helped us out and were so sweet to buy them for us. Thanks mom!

After 2-3 months of the high fiber diet it didn't seem to help much. The problem was that some weeks it seemed to be helping then all of a sudden he would be backed up again. It really was a tug of war. I would go from being really concerned to thinking maybe he was getting better. I would put off taking him to the doctor, cancel the visit, only to reschedule a few weeks later. I really was confused and torn and frankly didn't know what to do. So back we went to the parrot lady....err...I mean doctor.

This second visit was even more worthless than the first. She felt his tummy, told us to keep up the high fiber diet, and come back in 2-3 months. That visit was also $300....we never went back after that. To this day I do not understand how the medical system can work the way it does. I am paying the doctor to find out what is wrong yet they can take my money and do NOTHING and I cannot demand a refund?? I just PAID you to investigate my child and you told me to feed him fiber. The other thing that makes no sense to me is that she could have run ANY tests she wished. Again, I would be the one paying for it so why wouldn't she have tried something? Anything would have been better than nothing. Even if she had drawn his blood I would have felt that paying her $300 was worth something!

So we went on with life as it was, stuck to a high fiber diet, lots of benefiber, and eventually had to use enemas to get his waste out of him. We had always thought Greysen was a quiet child but didn't realize that it was the build-up of stool causing him to be lethargic. We began to notice that after giving him an enema he would get tons of energy and seem like a much healthier child. Little did we know, things were much worse than we thought...

Hard to believe he is so sick here and we didn't even know it!

Little Sister Harper came along in 2009

Such a sweet and tenderhearted boy

Blog with a purpose

When I started this blog my goal was to raise awareness of Hirschsprungs so that others would not leave the hospital with a newborn undiagnosed. I wanted people to know what this disease is, how to recognize the symptoms, and encourage people to be an advocate for their children. Deep in my heart I knew that God wanted me to write this blog. I doubted my self and wondered why people would wanna read a blog about poop and how would this help others. I decided that it didn't matter. People could choose to read or not. Some may not even understand but thats ok because God asked me to do it so I did. I told myself that even if it helps one person then its worth it. 

Fast forward to yesterday...

My phone and facebook started blowing up with texts and voicemails asking me if I knew "so and so" because their newborn son may have Hirschsprung's disease. It kind of made me giggle. Poop is what I'm known for I guess. The cool thing is that a lot of people may have never even known about hirschsprungs had I not written my blog. The mom of this boy told me she had actually read my blog a few months ago! Now, I don't really know this couples full situation yet but how cool is it that God knew this family would be going thru this and he cared enough to put things in place beforehand?! I don't know how I can help them being so far away but sometimes its just nice to know someone that has been thru it:) 

This has also stirred up some emotions for me. The whole process of getting a diagnosis was extremely frustrating and annoying. I feel for this family. Part of me wants to say, "you will be fine because your son didn't have to wait 6 years like mine did!" But then I remember how annoying it was to have people compare their medical experiences with Greysens. Its not that people don't care but each situation is unique and to compare them is just not possible. I would even go farther to say that this is especially true with Hirschsprungs because each individuals response to treatment is VERY different. Some kids have the pull-thru procedure and are completely normal afterwards. Others may have the procedure and continue to struggle with various issues (like Greysen). I've developed a way of thinking when someone is undergoing a medical crisis and its something like this:

#1-Their experience is not mine

#2-Their experience is real and its most important to them in this moment

#3- There is always someone who is more sick than your child and someone who is more healthy.          Neither of these discredit what YOUR child is going thru. 

#4- Do not talk about your experience unless asked. Its just annoying and makes people feel like their situation is less important. 

And lastly some advice for friends and family:

#1- Do not call or text everyday asking if the results of the biopsy are in (Or any other results for that matter.)

When Greysen had his biopsy we were told the results would be back in 4-5 days. It took 2 weeks! 

If a person says they will let you know the results as soon as they know then they probably will. Especially if you are family, I doubt they will forget to inform you:) It's stressful enough waiting for the results so don't add more stress for them!

#2- don't talk about the time your grandma had heart surgery or your child had surgery (again, unless asked) And definitely don't start that conversation with "We know exactly what you are going through..."

 While you may be able to relate to their situation you have no idea what they are going thru because every person responds differently in these kinds of scenarios. Some people may be freaked out while others may be cool and calm. Personalities play a huge part in dealing with a crisis. 

#3 DO send them visa cash cards/giftcards

When a child is in the hospital its expensive! Kyle and I ate as cheaply as we could and it was still about $30-40 a day to eat in the cafeteria or head across the street to Panera. My good friend Jessica and her mom gave me a $50 visa card and it was the biggest blessing. I spent every penny of that card with a grateful heart. My other good friend Erin gave me a starbucks card. Coffee is what kept me going! I was so grateful for those gift cards and everytime I used them I was reminded of how loved I was:)

And lastly if you don't know what to do just pray! Or ask them what they need. Offer suggestions of how you would like to help and really mean it when you offer. Sometimes its nice to call a person  and not feel bad saying "Hey a meal would actually help us out a lot!" And if you don't know what to do just ask:)

Gastrograph

A few weeks ago Greysen had another x-ray that revealed a build-up of stool despite the fact that he is going to the bathroom everyday if not every other day (bathroom scheduling is a blog in itself which I intend to write for all my mamas of hirschsprungs babies). For some reason his little body isnt keeping up with the digestion process. As fast as his body is processing food its not getting out as quick as it should. The urge to go isnt there either which is a huge set back since right after surgery he was doing great. Yesterday the nurse called and said they wanted Grey to have a Gastrograffin Enema, also known as a barium enema x-ray, done as soon as possible. Under normal circumstance a build-up of stool is not a huge issue but in a person with Hirschsprungs it can be very dangerous and even deadly. Enterocolitis, a bacterial infection of the small intestines/colon, can occur. If left untreated it can spread quickly and get into the blood stream causing a condition known as septsis. Its very scary and a fear that is always at the back of my mind. Any sign of a fever or diarrhea (basically flu-like symptoms) can be the onset of enterocolitis.

The doctor scheduled the x-ray for today and ordered them to give him minimal sedation because he HATES anything involving the hospital or doctors visits. Last time we were at the doctor his heartrate was 220!! In his mind he wants to know if he is getting an IV, are they gonna stick something in his butt, are they gonna draw his blood, is it gonna hurt, what are they gonna do and in what order,and does he get a toy? These are a  6 year olds thoughts! As we pulled into the hospital he said to me, " I wish this was all a bad dream." Talk about making me wanna cry! So we get into the x-ray room and I had explained to him, "This time will be better because they are gonna give you medicine to help you not be scared." So he asks a million questions about the medicine. Is it gross? Is it a shot? Do I drink it?...Then the radiologist asks me when he last ate. He's not being put under so I'm not sure why she is asking me this. He had just had a snack before we came. She then informs me that he can't have the medicine unless he hasn't eaten within 6 hours which he had. No one had given me instructions that he wasn't supposed to eat! So now Greysen is freaking out even more because what I had told him and prepared him for is now changing. After some crying, lots of convincing, and bribing he agreed to do the x-ray without the sedation. A barium xray is not fun! They put a tube in your bottom and fill your colon with a liter of fluid that "highlights" your insides. As if thats not bad enough, they then tilt the table in every direction and ask you to turn from side to side while they take x-rays and you have to do everything in your power to hold the fluid in! It feels like your insides are gonna explode!

So now what? We wait for the doctor to call. He is going to send the results to Greysens doctor in Denver. The possible cause of his problems could be that the sutures where his intenstines were reconnected to his rectum could be healing too tight making it hard for stool to pass. This would mean another surgery:( Another reason could be that he just needs to retrain his bowels. This can be done through physical therapy or the bowel mangement program in Denver. Whatever the reason I know that I just have to keep praying for complete healing for my boy and try my best to not be discouraged. Kyle and I left with a pit in our stomach. I know that people care and are just as concerned as we are but its really hard for me to answer questions. Part of me hates even telling people he is having more tests because I don't have the answers to their questions. Their questions are the same ones I have and dont have the answers to which leaves me feeling even more frustrated and annoyed. My solution is to write about it here. I appreciate each and every person that follows our story. And just to be clear I welcome any questions on this blog:) So... as soon as we have an answer I will be sure to blog about it here!

These are his "I hate the doctors office" faces haha

16 days

As we brought our new baby home from the hospital I was so in love with this little guy. In fact, I hated that I loved him so much because now I became a worrier. I don't like to worry. I tend to air on the side of being under cautious because I just don't want to be a mom that worries about silly things. I didn't want to be the crazy mom bringing her child to the doctor for every little thing. This would later come back to bite me in the butt. I remember when Greysen was 8 weeks old we decided it was time for him to sleep in his crib. I was terrified! A couple I had known had just lost their baby to SIDS so this was a very real fear of mine. I remember telling God, " I don't want to live in fear and I don't want to fret over my baby, I want to ENJOY him!" I remember so clearly God said to me, "He belongs to Jesus. He is yours until the Lord decides to take him and its up to God when he does. No amount of worry or over-protectedness will keep him from dying." From then on I released him to God and made it a priority to not fear over the loss of my children because it was nothing I had control over. As the weeks went on Greysen was fairly healthy. He was eating and pooping great. He was having some episodes of projectile vomiting but the doctor assured me it was probably due to my body producing too much milk which was causing him to eat too much too quickly. When Grey was 2 months old I returned to college. At 4 months old I started implementing formula and by 6 months old he was completely formula fed. This is when things started to take a turn. Everytime I took Greysen in for a well baby check-up I always marked the box that said "do you have any concerns?" I would explain that it seemed difficult for Greysen to have a bowel movement. The doctor would say it was just normal constipation and that its normal for some kids to go only once a week. I wasn't convinced but I thought "These doctors know more than me, I respect their decisions, I don't want to be a crazy mom that insists something is wrong when their isn't." We were instructed to put mineral oil in his bottles and add benefiber too. I should have bought stock in benefiber because he went thru a costco sized can each month! At about a year old we decided to switch doctors because I didn't like how the doctor dismissed my concerns so easily. Dr. Gunville was my husbands doctor as a child so I figured he was getting up there in age and was ready to retire because what else could explain a doctors reason to ignore a constant complaint??? We switched to Dr. Tapia at The Childrens Clinic where the atmosphere and care was a night and day difference! Dr. Tapia listened to our concerns and assured us that Greysen probably just had chronic constipation and to continue giving Greysen the benefiber. FYI mineral oil should NOT be given for long periods of time because it inhibits the absorbtion of minerals and nutrients. That would have been awesome to know from Dr. Gunville who had us giving it to Greysen for over 4 months! So again we went along with the doctors orders even though it seemed like nothing was helping. At about 16 months old things really took a turn again when I realized Greysen hadnt pooped in 16 days! I remember pulling into our church parking lot to meet my husband. I decided to change Greysens diaper and thats when I saw huge lumps in his stomach. I remember crying and thinking something isn't right! I immediately called the doctor and of course had to wait for the on-call doctor to call me back. After telling her the story she tells me he is probably fine and to just continue giving him fiber. He did finally go because I would do everything I could to get that waste out of him. I remember thinking "This MUST be poisioning his little body!" I just cried and felt helpless and frustrated. Once he would go it would feel like I didnt need to take him to the doctor because EVENTUALLY it would come out. It wasnt easy and sometimes took a long time, but eventually he would poop, even if that meant waiting 16 days. The doctors didnt seem concerned about him not having a bowel movement for 16 days but I did finally convince them to refer Grey to a specialist. So, reluctantly, they referred him. And again, I felt like a crazy mom asking to see a specialist when clearly, in their minds, Greysen just needed a better diet and more fiber.

Proud parent of a....pooper?

On July 4th, 2007 my due date was a week away and Kyle called into work because I was having pretend contractions...ok really I wasn't having any contractions and I felt fine but who wants to work on the 4th of July?! The plan was that kyle would go to work the next day and claim it was false labor. But the joke was on us because at 5:30 that evening, as we left to go to the fireworks, my water broke! I just think God didn't want us to be liars!

At 11:27 pm we welcomed our little guy into the world. We got settled that night and fell in love with our baby boy. The next day brought tons of visitors. I started getting the baby blues VERY badly. I didn't know what was wrong with me but it only got worse once Greysen began to gag and choke. I was confused because I didn't know newborns did that (fyi they don't). People would be holding him and he would start to gag and I would wanna cry and grab him and tell them to get the heck out of my room. I refrained. Then along with the gagging he started to actually spit up bile. Now Im not a nurse but have worked in the medical field and was also a nursing student for 2 years. It really doesn't take a genius to see that something wasn't right. I told the nurse he was spitting up bile and her response was to hand me some wash cloths and tell me that it was probably amniotic fluid. Here is where my frustration with the medical field begins. #1 that nurse could have at least pretended to care and actually look into the situation. #2 she could have consulted the doctor instead of making her own diagnosis. I have 4 kids and now know that babies don't generally spit up amniotic fluid. Should't that have been a concern too if thats what she thought it was? I was a first time mom so I had no idea. Looking back I see so many mistakes but I guess hindsight is 20/20 right?


I wanted Greysen in our room but couldnt sleep a wink. I would hear him gag and jump up frantic that he would choke and die. I would hold him and just cry as I watched him gagging.  I remember looking at his tiny body and apologizing to him for bringing him into this terrible world. At 24 hours old Greysen still had not had his first bowel movement. The night nurses were wonderful! They didn't seem concerned but offered to keep him in the nursery and put some heat packs on his belly. I still remember the nurse, her name was Bobbi. She worked so hard that night to get him to poop!

The doctor came in the next morning and spoke with us. I honestly don't remember much but I remember that he didn't know what was wrong with our son. He thought maybe his rectum was too tight to poop and thats why he hadn't had a bowel movement yet. Nothing serious. Really the whole hospital stay was a blurr to me. I was on a high from the excitement of our first baby, worried about our baby, and trying to not cry in front of people, all while dealing with the interruptions of visitors. I wish someone would have told me it was ok to cry for no reason. I wish I would have said no visitors. At one point Kyle said they were gonna do an xray to see if maybe there was a blockage. The xray came back fine. Then Kyle informed me that if Greysen didn't poop soon they were going to fly him to Denver! Thats when I realized how serious things were. I cried, and prayed, and begged God to release whatever was keeping him from pooping. I don't remember the moment but I remember someone informed me they finally got him to go! I knew Greysen would do a lot of things in his life that would bring me joy but I never thought pooping would be one of them!

After that he seemed to be fine so there was no more mention of flying to Denver or any follow-up for that matter. Even at his 4 day check-up there was no mention of his issues after birth and eventually it would be a forgotten occurence....

Advice and lessons learned:

#1 If you visit someone after having a baby, whether you are friends or family, don't stay for longer than 20 minutes
#2 If you are a nurse, you are more important than a doctor. You are the patients advocate and voice!
#3 If you are a parent, you are your childs advocate and voice. Fight for them. Fire doctors that don't.
#4 Follow your gut even if it makes you seem over protective.
#5 No matter how advanced medicine has become, things are missed.

And lastly, remember that there is only so much you can do as a parent, let God step in and do the rest!

Everything is ok but it isn't

7 Months Pregnant

In October of 2006, my husband Kyle and I found out we were expecting our first baby. At the time we lived in a one bedroom apartment, we were both in college, we had no health insurance, and Kyle was working as a children's pastor for $1000 a month. To say we were unprepared is an understatement! Luckily both of us are "take it as it comes" kind of people and we knew that God had a plan for us. We knew this baby was a gift from God.

My pregnancy was uneventful until we had our 20 week ultrasound. It was the day after Valentine's Day and we were so excited to find out we were having a boy! The ultrasound tech said to us, " do you want to know how I'm sure it's a boy?" In my head I was thinking well there either IS or ISN'T boy parts right?! He rewound the ultrasound DVD and hit play. As we were watching you could see the baby's hand go from above his head and reach down to grab his boy parts. We laughed and, I'm sure, said something like "that's our boy!" The ultrasound tech never seemed concerned and sent us out the door with a million pictures. We headed to dinner where we would announce to our families that their first grandbaby was a BOY! His name would be Greysen:)

A few weeks later at my doctors appointment the midwife gave me the results of the ultrasound. Everything looked good except the baby's stomach looked a bit enlarged. The Midwife assured me that it was possible he could have just swallowed amniotic fluid at the time of the ultrasound, making his stomach "full". It was probably nothing but I needed to have a specialist do an ultrasound to confirm that nothing major was wrong. At 28 weeks pregnant I walked into Dr. Jackson's office. He performed the ultrasound and confirmed that Greysen's stomach was not enlarged however his gallbladder was. I was concerned and asked a lot of questions but got no answers. The doctor didn't really know what would cause his gallbladder to become enlarged but he wasn't concerned and thought it would probably "resolve itself". He told me to come back at 35 weeks for a recheck and we would see how it looked then. So 7 weeks later we were back in the same office. Dr Jackson came in, spent 2 seconds looking at Greysen's gallbladder, then gave us the news that his gallbladder looked fine. He said there was no reason for concern and that Greysen would be a healthy baby boy...he would prove to be very wrong.

Hirsch-what??

Hirschsprungs disease occurs when some of the nerve cells that are normally present in the wall of the intestine do not form properly during fetal development.

During digestion, intestinal muscles move food forward in a movement called peristalsis. In order for this movement to occur, special nerve cells called ganglion cells are required. I like to think of ganglion cells as fingers. The fingers are what move food thru your intestines so eventually you can poop. Basically Greysens "fingers" are missing so the food just sits there collecting in one spot, stretching the colon, and causing severe problems.

Eventually, a bacterial infection can develop in the digestive tract (enterocolitis) causing serious problems. Severe worsening of the obstruction can lead to a hole in the bowel (perforation) and severe infection.

All children with Hirschsprung disease require surgical treatment.

Below is a picture of a normal sigmoid colon.

Below is Greysens sigmoid colon. It was stretched to 4+ times the size it should have been. It could have and probably should have burst. God was watching over him:)

My hope in writing this blog is to tell Greysens story, bring awareness, and keep our friends and family updated!

He got the short end of the stick

Short Segment

Greysen has what is called short segment hirschsprungs. There are several types depending on how long of a section your intestines are missing the "fingers" (ganglion cells). Greysen has short segment because the area missing cells was only about 4 inches long.  Aside from short segment there is also ultra short segment, total colonic...you get the idea.

1 out of 5000

Seems like a lot right? The chances of having a disease mean nothing when your child happens to the "1"... forget the other 4999.

1 out of 5000 are born with hirschsprungs and it occurs more often in first born males.

Most babies are diagnosed right after birth or within the first year of their life. Hirschsprungs is a sneaky disease because if you have short or ultra short segment it can be disguised as constipation. It can cause "just enough" problems to be an issue but not to the point where you feel the need to run to the emergency room just because your child hasnt pooped in a week. And besides, no one wants to pay for an ER visit just to be told "eat more fiber". This disease is ugly, its sneaky, and as a mom of a 6 year old with it.... its just downright exhausting.

I have sat on the bathroom floor with my son for 100's of hours trying to talk him thru pushing out his poop.

I have yelled at him because he just "isn't trying" and "he's holding it in"

I have cried many tears of frustration because my son hasnt pooped in days and it MUST be posioning his body??!

I have been frustrated at doctors that brush off my concern and tell me "It's just constipation, he will grow out of it".

I have given my son adult doses of exlax and miralax for a week straight with no results.

I have given him mineral oil, benefiber, probiotics, enemas, ridiculously expensive juices with added fiber, metamucil....you name it he's tried it.

I have called the doctor crying because my son has lumps in his tummy and hasnt pooped in 16 days...yep you heard that right. 16 flippin days!!!

I have learned a lot and I hope to share it with you. Its long and its exhausting and its about poop. But if you stick with me maybe we can learn enough to help someone else. If I can make a difference for even one mom or one child then this blog will be worth it:) Please feel free to share my blog...you never know who might need it!