General Surgery

We had an appointment with general surgery yesterday, it was supposed to be in December but because Anniek was waking me during the night complaining of her g-tube hurting her they were able to move it up to 2 days after I called!  I had a conversation with cardio about the possibility of having the tube removed on the phone, but they said they would talk about it with me after the appointment with general surgery.  Yesterday tge general surgeon came into the room and said he just got off the phone with cardio and they decided that the tube could be removed today!!!
So Anniek took the g-tube out for the last time!!!

Student Of The Month

Anniek's teacher called me this morning to let me know that Anniek was chosen to be student of the month!  When we moved in January Anniek had to switch school and although the old school knew of Anniek's learning disability they didn't put her right on an IEP because we did not have the doctors retort.  Anniek's teacher at the old school also seemed to give up on Anniek when she got sick in the fall. there would also be notes THREE times a week with behavior issues. When Anniek came to the new school her reading level was 2...basically a lower end kindergarten reading level.  When Anniek came to the new school they put her in a class with a teacher that was used to special kids and feeding tubes!!!  He started Anniek on an IEP from the start and has not let her get away with things like the other teacher did at the old school.   When the report came and they set up the IEP they hardly had to change anything they were already doing for her to help in the school.  Her reading level also came up to a level 6 with the help they are giving her.  Everything is just so much better here for Anniek.    The teacher said that Anniek worked very hard to get the award this month and he is proud of her for what she has accomplished in a short period of time...almost makes me wish I moved here sooner.

No Wheels!!!

Anniek has been riding her bike outside since the nice weather came and is constantly taking brakes in what she is doing to ride her bike on the path that she is allowed to go on. she does the loop once out twice then comes back in.  My goal was to have the training wheels off this year as the new place she is able to ride it more. So I had been slowly moving the one training wheel off the ground until it was not touching at all and the other one only touching half the time.  One of the neighbors that has a child the same age as Anniek said that she told her child that if he went 10 sidewalk squares he could get a slushie.  Another child that is Anniek's size was outside yesterday evening and he does not use training wheels so I asked him if Anniek could try riding his bike.  He agreed and I told Anniek if she could ride three bike between trees that she could get a slushie.  She got on the bike and ride father then the tree!!!   After that Anniek asked me to take her training wheels off so I made sure I did tart before she changed her mind.  Here is a picture of Anniek riding with no training wheels.

Left With Questions

Anniek's cardiologist appointment today went well.  We see them again in 6 months, so I was happy about that.  Then I got thinking about the one question that the cardiologist asked for some reason.  The cardiologist asked about how long Anniek was on antibiotics when she was sick last fall and on a PICC line with IV antibiotics for a month.  She said was looking into it more and said that usual treatment from what she has read is usually a year of IV antibiotics so she wants to look into why the Doctors at the time had decided why they felt that Anniek needed them for only a month. What Anniek had in the fall is pretty rare - Post Strep Reactive Arthritis.  It really left me wondering why she mentioned had suddenly realized this.  From what I had read in the little information that is out there about this had said a year.  So I do not know why out of the blue she asked about how long she was on antibiotics for. She also asked if she could go grab one of the other Doctor's students so that she could listen to Anniek's heart and her murmur.

General Surgery

Good News!!!  General Surgery decided that Anniek's G-Tube is not yet in need of being relocated!!!  They would like to see her back in another year to recheck it and see if it needs to be done then and they will see her sooner if she is in pain from the G-Tube.  It really depends how much she grows.  The General surgeon also said that she needs to gain weight (as she is hovering around 40lbs).  He also said that it would be good for her to see Genetics, I told him we are on the wait list to see them and he said that he feels that she might have something genetic just like the GI doctor though.  I am a little bit disappointed that we were not referred to Genetics sooner and am hoping that we get a date soon for Genetics.
After the appointment with General Surgery we walked over to the Canadian Blood Services building as Anniek's grandfather was donating plasma.  She got a big surprise as my brother was also donating too.  So instead of Grampa driving her to school like was planned she wanted her Uncle to drive her to school.  So my Dad moved the car seat over to my brother's car for him (my brother was still donating) so that my brother could bring Anniek to school.  She was VERY pleased about that.

WE MOVED!!!

On Friday we moved to a new place...A bigger place so we have more room to put things.  Anniek went to a respite place that she goes to once a month so I can get a bit of a break, which is really nice as I am a single Mom.  Anniek went to school on Friday, then the moving truck came and picked up all the big things that me and my Dad could not move by ourselves and moved it over to the new place.  After school Anniek went to the respite place for the weekend and she knew that she would come home from the respite place and be at the new place.  So me, my Mom, my Dad, my sister, and Anniek's godmother made sure that Anniek's room was totally set up for when she came home from the respite place.  At the respite place Anniek's buddy was there that totally loves her.  When she came home she was super excited to be at the new place and had to check out EVERYTHING.  Tomorrow we go to the new school and meet Anniek's new teacher and get shown around the school.  Anniek will be taking a Special Transportation bus van to her new school and she is really excited about that.  She also wants to get everything that is left to be put away ASAP so she can get a new kitten as I told her we can get one after we are settled at our new place when we had to put our cat down at the beginning of the month.

GI Appointment

The GI appointment went well.  They looked at her G-Tube and it needs to be moved because it is close to her lungs so it need to relocated.  He also gave me some recipes that are high fiber to help get her off of the PEG as well as gave her a prescription for her regular formula except the formula will now have fiber added to it.  The GI doctor also wanted to do blood work so I asked him if he could run a couple genetic tests at the same time...which is awesome!!!  He also sent off a referral to General Surgery to have her G-Tube relocated.

Rhumatology Appointment

Anniek had an appointment with her rhumatology doctor today.  It went really well and she got discharged from rhumatology but they also gave a referral for physiotherapy to be done at the school to help with her joints and muscles so they don't get tight. 

Holiday Troubles

A few days after Christmas Anniek had pains in her tummy and said it really hurt and I touched it and she was in pain so off to the Emergency room we went because of course it was a weekend. They just felt Anniek's tummy and decided it was nothing and sent her home, the next day (New Years eve) we had to bring her back to the Emergency room as she was no longer keeping food down and her tummy was kind of stiff.  So they did x-rays and she was backed up as much as she could be, they tried to get an IV and couldn't get one so they used her G-tube for 4 hours of PEG and gave her an enema, which didn't work well at all, hardly anything came out.  So they told me to give her PEG 100 mL/hour for 8 hours a day until she did a good poop, then give her 15 mL/meal every day.  They also did a referral to see the GI doctor for her problem.  The next day (January 1st) we once again had to go to the Emergency room and she has a UTI infection.  All I was hoping was that Anniek would not be admitted to the hospital for her Birthday (January 2nd)