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!