Wishes Do Come True....

It's been FOREVER since I've updated all of you! Greysen is doing exceptionally well since his surgery in July! We had a few minor problems in the beginning but now it seems like he is a completely normal kid and I often forget he has a port hanging out of his belly! I can honestly say that the cecostomy was the best decision for our family. It has freed up so much of our time in the evenings and now Greysen is using the bathroom ALL BY HIMSELF! Completely independent of Kyle and I! Truly, this is such a relief for us and has lightened the burden immensely! Now on to an even better announcement (In our house what could be a better announcement than Greysen pooping by himself??!!)....

Last December, I submitted an application for Greysen to receive a wish through the Montana Hope Project. Honestly, at first, I almost didn't do it. I had to convince myself that Greysen was sick enough to deserve this (I mean there are kids dying of cancer and kids that are terminally ill with other diseases). After speaking with the Coordinator he said to me, "It's about the kids. It's about recognizing what they go through." The thing I LOVE about the HOPE Project is that they grant wishes to kids that go through chronic, terminal, or even short-term illnesses! Its about giving the families a chance to be together and forget about the daily struggles of living with a chronic disease. Let's be real: Greysen and our family have been dealing with this disease called Hirschsprung's for EIGHT years TWO months and THREE days. We've turned our trips to Denver into what we call "Hospications" (Hospital+Vacation: yes I made this word up haha), we've left our other children for weeks at a time, we've ignored our other children to handle Greysen's countless hours of  medical needs in the bathroom, we have gladly sacrificed so much to care for Greysen but it takes a toll on a family. Aside from the toll its taken on us, Greysen has endured a lot of trauma. We always try to keep a good attitude and look for the positive in this. The other day he said to me, "I think I know why God gave me Hirschsprungs?! To help others!!!!" Despite his good attitude, what you don't see are the days when he is struggling: "Mom, sometimes I feel like you are ruining my life when I have to do all of this stuff" "Mom why did God give me Hirschsprungs?" "Mom, sometimes I don't feel like a normal kid" "Mom, I hate my life". These phrases are almost too much to type out but its the REAL side of what he is going though. He has developed anxiety from all he has suffered and it breaks my heart! (FYI: He is seeing a counselor to deal with all of this)

This is why the HOPE PROJECT exists!!!!! 

The Hope Project tells sick kids, "We see what you are going through!" It tells the siblings, "We know you get the short end of the stick!" It says to the parents, "We know you are tired and we know you spent your vacation money on hotels and hospital stays! (Praise God for our church friends and family that helped us this year in that area!!!) So with all of that said Greysen will be getting his wish Granted, and in a few short weeks, we are heading to DISNEY WORLD!!!!! We will stay at a special place called "Give kids the World Villiage" (Google it! It's amazing!) and we will visit some other theme parks as well! To top it all off we just found out they are allowing Grandma Becky to tag along per Greysen's request. With our Ben having Asperger's I'm not sure how we would manage without her!!!!! Poor Grandma Becky will be exhausted when she gets back! I know that we don't deserve this! It's a gift that we could never repay and the gratitude I feel overwhelms me! I always tell people going thru a medical crisis, "Don't compare your sick child to other sick children. There is always someone sicker than your child and someone healthier than your child, neither of these discredit what YOUR child is going through!" We are forever grateful to the Hope Project for recognizing Greysen and our families' struggle with Hirschsprung's Disease!!!!

Next time I post I will be posting all about our trip so be ready for lots and lots of pictures!!!! Oh and did I mention we get to the front of EVERY line???! Eeeeek!!!!

Fear

Lately, I have been afraid. I KNOW that God is with me (and Greysen) but why is it still so hard not to fear? When Greysen comes up to me crying and says, "Mom I'm afraid I'm gonna die", I can't help but be afraid! Of course I tell him all the things I know to be true but yet I cannot feel them. I tell him that only God knows when we will die and that I have prayed that God would allow him to live to 100 years old. I tell him that Jesus has been watching over him before he was even created. I tell him that it's a miracle he is still alive and that it's only because Jesus has been watching over him that he is here today! I know all of these things to be true but yet I cannot help but fear that God will decide to take him from me! 

I've talked to several other moms that have the same fear. Anytime you put your child in the arms of a surgeon you wonder, "Will this be it? Will this be the time that something goes wrong?" I think back to when Greysen was first born, before we knew that anything was seriously wrong with him. We brought him home from the hospital and I remember being SO afraid that he would die from SIDS. I remember crying out to God, "PLEASE let me keep him forever. Please don't take him from me!" In that moment I heard that still small voice say to me, "Natalie, he is mine. I have entrusted him to you. When I am ready to take him back no amount of worry or fear will keep him here." At 3 days old I realized Greysen wasn't mine and that he belonged to God. My job was to raise him and love him and enjoy him for however long that might be. It brought me peace knowing that I had to trust God to watch out for my son because God is the only one that can see what we cannot. He knows when to intervene when we don't/can't. He watched out for Greysen for 6 years when we had no idea how sick he was. In the worlds eyes, Greysen got lucky. In my eyes, God wasn't ready to take my boy back. 

When I am struggling with fear I have to remind myself that Greysen belongs to God and that God is holding him (and me)! If he chooses to take any of my children he is still the same God yesterday, today, and forever!  

The bible verse I chose for myself  this year couldn't be more perfect:

"fear not, for I am with you;

    be not dismayed, for I am your God;

I will strengthen you, I will help you,

    I will uphold you with my righteous right hand."

Isaiah 41:10 

I am so glad that God knows me better than I know myself. I am glad he knows Greysen better than I do. In the last few months Kyle and I were left feeling like we no longer knew what to pray for our boy. It's so hard to pray when you can't see the larger picture but then I am reminded that God see's the bigger picture and I have to pray, "Lord YOUR will be done." If it were my will then God would heal Greysen:) Kyle preached a sermon called "Trust" this last Sunday (May 17th) and I was so encouraged by it. It was such a great reminder that God is in control and we have to trust him. Despite our circumstances are we putting God first? It made me realize that this is why I don't know what to pray! I have been praying for what NATALIE wants, not what God wants! My prayer should always be Lord your will be done! If God had answered our prayers for Greysen to be healed then we would have missed out on all of the blessings along this rough road: 

• the lessons we've learned
• the growth of our faith in God
• the unexpected blessings of meals, money and gift cards 
• the opportunity to see God caring for our needs when it seemed impossible
• using our experience to bless others
• No one is immune from hardship or circumstances that seem unfair 
• Bad things happen to good people, good things happen to bad people.

My prayer now is that the Lord would help me to not fear! The Lord see's the bigger picture! Whatever he chooses to do, in and through Greysen, I know that his life will draw others to Christ. He has the sweetest little soul for a 7 year old! I'm so glad God is in charge of his life because he will do a much better job than I can because he KNOWS Greysen inside and out!

So now I leave you with the most comforting song that has been on repeat in our house;) 

You Know Me

Have your heard???

The wristbands are here! Be sure to message me which colors you want and how many! I've already given 100 of them out so don't wait or they might be all gone soon! Greysen took a bunch to school today and also took his surgery book to share with his class. He is so excited about these wristbands and I can see how much it means to him:) We sent out our first shipment today to family and friends that do not live near us. He was looking at all the packages asking me, "Mom, who is this person?" It was so cool to tell him about people that don't directly know us but are still so giving and supportive! If you want a wristband message me today!!!

The Plan is not to Plan....

We finally have Greysen's testing scheduled! On June 15th and 16th we will hang out at Denver Chidren's for some special testing and then from there the Doctors will decide the next course of action. At this point we don't know if we will be able to stay and have a surgery during that same visit or if they will want us to make a seperate trip. It's possible that if they want him to have another biopsy after the tests that we will have to be there for a few weeks if they end up doing a surgery after the biopsy. Part of the wait is because we will have to wait around for the biospy results which can take a few days. So as of now Kyle and I have decided to plan to not plan! haha We'll just head down in June and go from there! A few things to be praying about are #1 that a room at the Ronald Mcdonald House would be available for us! #2 That everything would be able to get done in 1 visit! #3 That the Doctors would choose the best course for Greysen and for us as a family! Thanks again to all of you that have been so supportive and are praying! On a side note the wristbands should be here this week and Greysen can't wait to hand them out!!!!
 

Support Greysen and Buy a Wristband!

In about 2 weeks I'm expecting 300 of these Wristbands to arrive! They will be available in Gray for Greysen and Hot pink because, if you ask him, he swears that's his favorite color right now. The purpose of these are two-fold: #1 to raise awareness and show Greysen that we support him and #2 to help alleviate some of our travel expenses for his next tests/surgery! The cost for these are $1 each or whatever you want to donate! Anything above $1 will go towards our travel expenses but the $1 will cover the cost of the wristband and bring a smile to Greysen's face when he sees you wearing it:) If you'd like to buy one (or 10, 20, or 30!) here is what you can do: 

PayPal Payments
Choose the option of "send gift" to NatalieZigweid@yahoo.com. You can leave a message with your payment telling me: 
                                                1.how many wristbands you would like
                                                2. what color (Pink or Gray)
                                                3. Your mailing address. 
***Please add $1 for shipping. If you are paying above the $1 per wristband then please do not worry about the shipping cost:) 

Cash or Check 
Checks can be made out to Natalie Zigweid and mailed to : P.O Box 352 Big Timber, MT 59011. Please include Greysen's name in the memo. You can include a note or email me the following info so I can set aside your order:
                                                1.how many wristbands you would like
                                                2. what color (Pink or Gray)
                                                3. Your mailing address. 
***Please add $1 for shipping. If you are paying above the $1 per wristband then please do not worry about the shipping cost:) 

Greysen has been so excited about these wristbands and can't wait to see everyone wearing them! Your support and prayers mean so much to Kyle and I but even more to our special boy. I love seeing his face every time I tell him someone bought a wristband! 

Expect the Unexpected

As you all know I've been trying to get Greysen's surgery scheduled in Seattle for the last month and a half. I had a good chat with my friend Kara last Sunday after church and explained how I was feeling stressed and overwhelmed and wished that Seattle would hurry up so I could at least have a surgery date. She told me that she would be praying for us that this week would be the week I would get answers. Well I did get answers but not in the way I expected. After some back and forth with the Seattle scheduling department and nurses, I got a message from a friend on facebook. She asked me which Doctor we were seeing in Seattle and then explained their terrible experience with this same doctor. She hated telling me because, let's face it, who wants to be that person? But honestly I am forever grateful that she did because she probably saved us a lot of money and stress! Her experience was just more confirmation that Seattle was not to be where Greysen would have his next surgery. I got a message later that day from this doctor and first and foremost she sounded very rude and arrogant. Second, she told me that I would HAVE to make two separate trips to Seattle and that it was IMPOSSIBLE to do everything in one trip. Third, she told me in the first visit they would run some tests then SHE would decide if Greysen even needed to come back for a cecostomy. I immediately emailed our doctor's in Billings and in Denver and said we wanted to switch and have the surgery in Denver now. Within hours our referral was sent and Denver called me that day! It wasn't a nurse or a scheduling person that called me back, it was a DOCTOR! This was my first sign that we made the right decision. After she spoke with me she said she would talk with the team and then decide what the plan was going to be. The Doctor's in Denver had already decided that Greysen would need the cecostomy so this wasn't a matter of getting a second opinion. In fact, we have already have two doctors agree this is our next step. This was my main frustration with Seattle because we don't need to know IF he needs it we need to know WHEN. I'm not going to put my sons life in the hands of a doctor that is arrogant and having a power struggle. I need a doctor that has Greysen's best interest at heart and after this last week Denver Children's has my complete loyalty for the rest of my life.

Dr. Jacobson called me back on Friday after speaking with the head of bowel surgery. The plan has changed quite a bit from our original plan but I will explain why:

Greysen needs to come to Denver in the next few weeks to:

#1-Have a full bowel clean-out in the hospital 

• The full bowel cleanout is terrible. He cried and cried when I told him about it. For about 12 hours he has to drink this terrible tasting stuff called Golytely. Its like salted apple juice. YUCK! I tried to tell him that an NG tube would be a better option but he doesn't like that either. If he can't drink the juice and keep it down then he will have no choice but to get the tube down his nose. Last time he spent all day drinking the awful stuff only to throw it all up and end up with the NG tube anyways. Thinking about this makes me wanna cry. He was 6 then and now he is almost 8. 

#2- Get a new biopsy taken from his colon. 

• The Doctor wants Greysen to have another biopsy taken from his colon to be sure there are still nerves present. Hirschsprung's disease is caused by a lack of nerves within the colon or entire intestines. It's possible that not all of the diseased portion was removed during his first surgery so they want to be sure this isn't the case. It's also possible for nerves that WERE there during the surgery to die causing lack of function again. Once you have hirschsprungs you are never "cured". In fact, some of the nerves that ARE present may not function or fire correctly so removing the section without nerves does not mean you are healed after surgery. Such is Greysen's case.

#3 Get the Anal manometry testing at the same time he is under anesthesia.

• The anal manometry testing will be performed before the biopsy. This will test the:

• Strength of the anal sphincter muscles
• Sensation of stooling in the rectum
• Reflexes that govern bowel
• Movements of the rectal and anal muscles

All of this information will then tell us what surgery will look like in June. Our Doctor agreed that we could do all of this in one visit but that we would have to be there for about 2 weeks. The deciding factor in making two trips is this: If the biopsy comes back negative for ganglion nerves then Greysen will not be getting a cecostomy. He would be getting another pull-thru surgery instead. This would be another major operation and set us back a year and a half. More bowel would need to be removed which in turn causes more problems BUT could also help him. Again, it would be like his first pull-thru where we wait months after surgery to see how his body responds. We don't want this BUT a second pull-thru also has the chance of completely fixing him if all of his issues since surgery were due to lack of nerves. It's a gamble and it's one I don't wanna have to make again. Lastly, if his biopsy comes back normal the Doctor will then be able to schedule us for the cecostomy in June. The cecostomy would mean (more convenient) nightly washouts with no set date of reversal. It's not ideal but its the most predictable way for him to have a bowel movement, no accidents, and try to be a normal kid.

Kyle and I (and Greysen) need your prayers more than ever! We are going to expect the unexpected because we have no idea how all of this is going to turn out. Today we both agreed that we don't even know what or how to pray! Neither of these outcomes are what we want for Greysen but we have no choice. I feel comfort in knowing that God knows Greysen better than Kyle or I. He knows every detail of his body and he can use the doctors to heal him! Please pray for us, and with us, that #1 we would know WHAT to pray and #2 that God would guide the doctors thru all of this and that all tests would be definitive and bring answers and solutions and #3 that God would go before us and work out all of the details! As you are praying, if anyone feels led to share what God has asked you to pray for specifically I would absolutely love for you to share it with us! Thank you all for praying! Our family,church, and friends are what make this bearable! 

God can use poop

Thoughts on Greysen having Hirschsprungs: 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

When I am weak HE is strong!

I've been doing a bible study called "Gideon" that I did a few years ago. It is by far THE BEST study I've ever done. It's written by Pricilla Shirer and I promise you will LOVE it! It's about God using our weaknesses so HIS strength can be seen in us...when I am weak HE is strong! Every time I've done this study it's always been when I needed it the most. And lately I've needed it the most...

The past 4 months have been a time of uncertainty for me. I am exhausted. I am overwhelmed. At first, I was overwhelmed trying to figure out the next step with Greysen's treatment plan. After months of researching and weighing the pro's and con's I came to the conclusion that the appendicostomy would be the best next step for him. This was not an easy decision for me because it basically means he will have a stoma again... much smaller than his colostomy but none the less a stoma. Can I just say something? Scheduling a surgery in another state is not easy! I don't even know how to explain this but here is an example: When Greysen had to get his first surgery in Denver we were told he would just need one surgery. His doctor sent the referral and I spoke with the nurse in Denver. Everything was set to go and 2 weeks before his surgery we received his welcome packet with details of his surgery. The description of his surgery? Colostomy. Ummmm....we were never told he was getting a colostomy. You can imagine the look of horror on my face. I actually laughed when I read it aloud to Kyle and said, "Obviously they mixed up his packet with someone else's." I called the nurse in Denver to tell them of their mistake. Instead she informed that it was not a mistake and in fact he would be getting a colostomy. She also informed me that he would need to return 3 months later for a second surgery. This is kind of a big deal to hear this two weeks before surgery. As if I wasn't stressed enough about the cost of travelling for one surgery now we had to travel for a second one. And that meant I had to find sitters twice for the kids for at least a week each time. Its stressful for me! I know in the end it will all work out but that doesn't make it less stressful!

As if I wasn't overwhelmed enough with Greysen's stuff we've been realizing some things about our 3 year old Benley. After we moved to Big Timber last July we noticed a huge change in Benley's behavior. It became very difficult for him to function (properly) at church and around his peers. At home he was waking up 5-6 times per night after taking 2-3 hours to even fall asleep. He has always been a "difficult" child but it became apparent that he wasn't learning from any form of discipline. He has always been a sweet boy but yet he would walk up and kick people for no apparent reason. It never made sense to me because I never felt like he was doing it to purposely hurt someone. The more he interacted with our 22 month old Maddie the more we saw behaviors that didn't seem normal and Maddie was quickly passing him up in certain areas of development. This last December it got to the point where we couldn't handle it anymore. We weren't getting any sleep, Ben would have meltdowns that lasted 45 minutes, and we were at a loss of what to do. I started putting together some of his "strange" symptoms that, by themselves, didn't seem like a big deal. I came to the conclusion that Ben had a sensory processing disorder. I called and made an appointment with his pediatrician but they could't see him until February.

February finally came and we were able to speak with Ben's Doctor. He was actually VERY concerned about his behavior and wanted us to see another doctor as soon as possible. We left feeling very concerned and anxious. The soonest appointment with the specialist wasn't until the end of March! We prayed that God would give us answers sooner because we felt like our life had stopped. It's hard to move forward with something when all you have are questions and no answers. A week later the nurse called and said they had a cancellation and asked if we could come the next day! We dropped everything and made our way to Billings the next day. We went into the appointment expecting her to see some concerns then refer us to an evaluation clinic called "Full-Circle" for a diagnosis. Instead she gave us a diagnosis right then and there and it literally knocked the wind out of us:

The next month while we waited for Ben's evaluation for an "official" diagnosis (which wasn't until March 31st) we did a lot of researching and reading. When you hear the word "Autism" you automatically make certain assumptions (which I am sure you are doing right now as you read this.) We wanted to fully understand his diagnosis because, in all honesty, we didn't fully understand what Autism was. Before you tell me that you don't think my son has Autism or you "don't see it" I would ask that you would research High-functioning Autism and fully understand what it is. Also, if someone says they have cancer do you respond with "I just don't see it". No. Unless you live with someone that has Autism I don't think you can fully comprehend the daily struggle and what Autism "looks" like. Its different for every child and that's why it's called an Autism SPECTRUM disorder. Here is a link that explains it a little better

About a week after Ben's diagnosis we received yet another (answer to prayer) call that the Clinic had a cancellation and, "Could we come the very next day??!!!" Again, we dropped everything and headed to Billings that night because his appointment was at 8am the next day. I was so anxious and barely slept that night. Even tho the Doctor had already diagnosed him, part of me wondered if there was a chance she was wrong. Have you ever tried to make a decision, only to go back and forth about it until someone or somehow the answer is so obvious its no longer a question. Well about 5 minutes into Ben's evaluation with the 3 specialists, Kyle turns to me and says, "I think its pretty obvious we have an autistic son." And he was right. As of right now he has moderate Autism but with lots of therapy and PRAYER we hope to get him to a point of being mild. After the last few months of processing all of this I think we have finally come to the place of acceptance. It's hard to accept that ONE of your children has medical needs and now we have TWO! Someone said to me the otherday, "Wow the Lord must think you are really special to be able to handle this!" I couldn't disagree more. The Lord knows that "I" cannot handle this but he knows that HE can handle this....When I am weak, HE is strong!

We appreciate all the people that have been praying for us and helping us out! Please continue to pray for us as we navigate through speech therapy, occupational therapy, surgery and daily life!!!





 

The iPads are here!

If you didn't already know the iPads are here! The kids are so excited and I couldn't be more proud of Greysen for wanting to help others even in the midst of his own struggle. He is going to be making some more videos to let the kids know (thru their parents) that they will be recieving an iPad. As of right now we have raised enough to give away 8! I can't wait for the kids to get them in the mail! Here is the video link. They are just too cute for words;) 

http://youtu.be/8ZuEGYf9foE

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:)

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!