She Made The Paper!!!

Anniek stays at a respite home different times so that I get a break for a couple days. When Anniek was there this time they called and asked me if it would be okay to take Anniek out on the new wheelchair bikes that they got and if it would be okay if the local paper took a couple pictures and included her in the article. I said that it would be fine if they did that. A few hours later they called back as the lady from the newspaper wanted to do a phone interview with me and double check to make sure that it was okay that Anniek be in the paper and on a video clip on their web site.
The article is HERE and the video clip is HERE.

Cardio Check-Up

Anniek had her cardiac check up following her stent today. The cardiologist is very pleased with how things look with the stent and said that she will see Anniek again in 9 months. I am happy that it is not a year...but that is because the cardiologist said "So I see Anniek every 6 months usually right?" so I was like yes, hoping it would be 6 months...and she goes "okay then I will see her again in 9 months". So I am glad that I didn't correct her and tell her well actually you have only seen her every 9-12 months.

Discharged!!!

Anniek was discharged at 10 this morning. She did not want to get the IV taken out because she didn't want to have the tape taken off from the IV, she wanted to go home with it as she knew the tape would hurt coming off. The nurse told her that she can't go home with the IV still in...so does she want to stay in the hospital. Anniek said "YES" because she didn't want to have the IV taken out...so that back fired on the nurse a little bit. After the IV was finally out we were able to get things ready and head back to London. We stopped for a little bit at a rest stop so Anniek could walk around as suggested by the nurse on the way home. Traffic was clear so it did not take long to get home. We both glad to be at home and sleeping in our own beds tonight.

Cath Day

Today we were supposed to check into the hospital at 9, which was no problem at all. I was suprised that Anniek got up at 7 seeing as she was awake 4-9 yesterday with only an hour nap. I gave her a bath until 8 to keep her occupied and seeing as she can't have anything to eat or drink so that seemed to avert her attention from wanting something to eat or drink.
We checked in just before 9 and they gave us a room, Anniek was not too happy that she had to get washed with the special soap there. It was a good thing that I brought 2 of Anniek's favorite movies as they didn't call her back for the Cath until about 2:30 and she didn't get in for the bath until 3:00 pm!!! During that time she only asked for something to eat/drink 2 times which I thought was amazing!!!
The Cath went very well. They were unsure as to if they were going to put a stent in or do another balloon dialation. The doctor said that the last time he did the balloon dialation he dialated it to 7mm and when he went in today it was 6.5mm, so it has gone down since the last time...how quickly it went down we are not sure. He ended up putting a stent in and said that they had should be able to stretch it open a little big when she is older if needed. Anniek pulled through like a trooper and it only took 2 hours for the prodecure (scheduled for 4 hours).
We are spending the night at the hospital and will hopefully be discharged tomorrow morning.

Pre-Cath Day

Today was a busy day, we left London at 4 in the morning incase traffic was bad...we were hoping that Anniek would fall back asleep in the car on the way to Toronto, unfortunatly that did not happen. Apperently we missed ALL the traffic and got there in 2 hours...an hour and a half BEFORE the clinic opened. We hung out at Timmies for about an hour and Anniek had her formula and watched the little train that goes along the ceiling.
When it was close to 7:30 we went up to check into clinic and get the blood work and x-ray forms. We went down for blood work then stopped back up at clinic as a form was not filled out with what test was needed, then back down to blood work for another poke...Anniek was not happy about that but LOVED the Tinkerbell puzzle she got. Then we went over to x-ray, finished that quickly then up for an ECG and to the Echo appointment, then back over to clinic. We got everything done pretty quickly as well as one of the studies signed for by noon! Then we started with the other study and took a lunch break then finished the study ahead of the scheduled time. I let Anniek play in the Canadian Tire Play Park that she was asking to play in for about an hour then we headed over to the hotel.
As a BIG suprise for Anniek my sister came to Toronto and met up with us at the hotel we went swimming then out for dinner.
It was a pretty good day and as of now everything is still a go for tomorrow!!!

Off To Toronto

Tomorrow bright and early, also known as FOUR in the morning we, we are heading to Toronto for the pre-cath appointment for Anniek. She knows about the appointment and is okay talking about it, she just doesn't realize yet that she will need some blood work done. We are also going to get both of the studies done while we are down there. We will get the time for the Cath tomorrow at the pre-cath appointment and we are crossing our fingers that the day for the Cath does not get bumped. I will keep this updated while in Toronto the best that I can.

Another Study

I got home from school today and there was a letter from Sick Kids asking if Anniek could be a participant in a study. This study is to identify genes that cause heart defects in children and adults. Anniek's health will be followed by the project team and they are going to get a saliva sample. This will be good information for the future for children with heart defects. The results of the study when published could also prove interesting. We will get this done also when we are in Toronto at the end of the month for Anniek's pre-cath and cath.

TOF Study

I got a letter in the mail asking if Anniek could be in a research study to see if the timing of the surgicail repair of TOF affects how children learn and process information when they are older. I think it will be an interesting study. They are comparing 2 groups...Children that underwent the surgical repair when they were less then 28 days old (which is the group that Anniek fits into) and children that underwent the surgical repair when they were between 4 and 6 months old. I got the letter about the study about 3 weeks before I got the phone call to see if Anniek could participate...I was waiting for them to call to find out so that I could set the time of the study for when I had my reading week...but seeing as it is reading week now I am setting it for when we were in Toronto anyway for her cath. I am also happy that I will be getting a report about Anniek's performance in the study!!! The results of the study will be interesting when they have them too.