I am happy to report that I am feeling so much better emotionally than I was the last time I updated this blog. I think the end of 2016 was difficult for a lot of people. It was so draining for me right at the end. 2017, I vow to be a more positive person and not let my worries take over my happiness!
We have continued getting to know Alexis’ behavioral therapist- Stan, we really appreciate his expertise in handling the behaviors of Alexis and knowing how to implement a functional routine for her at home. It has really helped a lot.
What we know so far… (if reading about Bowel Movements [BMs] makes you uncomfortable- please click out now)
Alexis had to be really cleared out with Myralax and ExLax for the colonoscopy, she also had to fast for the MRI and colon transit study, she handled that all so well, she struggled with taking the breathing gas, which broke my heart but she ended up just fine after waking up from the anesthesia – that was day 1 of the 4 days of appointment between St. Mary’s and the Mayo Clinic. We found out that Alexis has a longer colon than normal, when she is holding in her BM it is causing things to back up incredibly which has started to change the shape of her colon. We need to work on getting her “plumbing” back to normal to prevent any further irreversible damage. Our goal is to keep her from getting constipated again. They said she was VERY backed up, which surprised me considering she had a whole bottle of Myralax the day before… She already doesn’t eat dairy but we will slowly be eliminating processed foods as much as possible, we will be adding more fibrous ingredients to her fruit smoothies and get in the habit of drinking at least 1 large smoothie a day, if we notice hardening of the stool we will give her castor oil, prune juice and other natural laxatives hidden in the smoothie. She has been vegan for a year and that has helped a lot, we simply need to get away from the habit of reaching for unhealthy vegan options and look at more plant-based high fiber meals. She may be a little reluctant at first to try leafy greens and new healthier foods, I think once she tries things like sweet potatoes fries (yum) she will discover all sorts of foods that are healthy and similar to what she loves now. If we are unable to keep her from getting blocked up again using natural methods, we will need to discuss more options with a surgeon about a Cecostomy. The issue with her becoming backed up is partially behavioral and partially due to diet, I am really hoping she doesn’t need surgery to remedy this.
Alexis was really responsive when talking to the doctors, she will say- “don’t hurt the belly”
we have been explaining to her that as long as she makes a great effort to use the restroom (she does not want us to say “potty” anymore) and eats more varieties of healthy foods that we will be offering her to try, then the doctors won’t need to “cut her belly” as she says- I was really impressed by how well she paid attention to the GI doctor as he explained to her what was going on inside her abdomen. Alexis assured me shortly after that appointment that she is ready to make some changes, we assured her again that it should not hurt her to go. I hope we are on the road to some positive changes in this situation, I am very hopeful and we really learned a lot.
Her other appointments included genetics testing and psych, we are waiting on insurance to see what they will cover for DNA tests that may help us understand Alexis a little more along the lines of genetic makeup and possible conditions/diseases she may be prone to develop in life. The psych doctor has no issue with us choosing not medicate Alexis at this time and keep working on her behavior, home schedule and BM routine at home with the help of Stan. The genomics results may take over a month to get and also may require more blood work from Keith, Cadence and I. At this time no follow-ups are scheduled, we just need to be really diligent about diet and keep working on her behaviors. Alexis is feeling back to herself and is excited to return to school on Monday.
The quirky side of things…
Alexis has many odd behaviors that sometimes make outsiders curious, other times really uncomfortable. We experienced a lot of this during our 4 day trip to Rochester. One thing was elevator rides, right now Alexis has a thing about the genders that surround her, she often wants only 3 boys and two girls in her vicinity, this really makes elevator rides interesting, we found it difficult to control her scolding people for entering the elevator if they weren’t the gender she thought was appropriate for the ratio she predetermined in her mind, it is hard to explain to people and impossible to express what is going on with these short elevator rides, we often got strange looks and a few evil glances even. At one point she got upset about a woman joining us who had a wheelchair, she kept saying “no wheelchair” increasingly louder THE WHOLE RIDE aghhh! That was the LONGEST elevator ride of my life. I hope the woman took no offense. Other than that occurrence I was able to calm her on the elevator when people would enter that changed the ratio- by taking her paper dolls that she makes and showing her that we had just the right number of girls and boys if we included them too. Sometimes we have to think on our feet to prevent outbursts, with the way the world is today- having my child scream at the top of her lungs, out of the blue- can make people really uneasy, including myself and I am used to it.
Another story I must share, I will never forget this appointment!
We had an appointment to meet a surgical consultant to discuss the Cecostomy, well…
…he never showed up. (road conditions were not favorable)
We waited for “Dr. Potter” for almost an hour with Alexis, she was being pretty patient considering how long we had to wait in waiting rooms and other places throughout our time there. We kept showing her the appointment agenda and assuring her that Dr. Potter would be there soon. After about 15 minutes she opened the door and would scream if we tried to shut it, we decided to not fight her on it and let the door stay open….
…she starts yelling for Potter (expecting Harry Potter we find out)
she would say – “Come on Potter” “Get in here NOW Potter” to every SINGLE person that walked by our room, it was extremely humorous for about 2 minutes but got old REALLY fast, we ended up canceling with him after 50 minutes once Alexis finally lost her patience completely. We decided that we’d reschedule with a surgeon closer to home if we need to go that route. I just giggle when I think about her expecting Harry Potter to come in and examine her. Gosh, that girl never fails to make me laugh even in stressful scenarios like that 😀
Keith came home a day early from Rochester so he could go to work, my Mom (Grandma) came to help with the last day of appointments and brought us back home afterward, that was really kind of her to drive for 12 hours round-trip, she insisted- it made Alexis pretty happy to see her Grandma.
Cadence stayed home at a friends house for the couple days until Keith got home. She didn’t have to miss any school that way, she sure loves learning and going to school, she is doing really well in 7th grade. She has moved to the High School this year- hard to believe how fast she is growing up.
Cadence is such a great support for Alexis, I know Alexis missed her a lot, she asked for her often throughout our stay.
Cheers, it’s a New Year!!! 2017…
I hope everyone has an amazing year, thanks for all the kind words and support you all have shown our family while we experience our journey through all the ups and downs. I learn more and more every single day and really enjoy sharing our experience with you all 🙂