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!