Swallow Study

Anniek had a swallow study on Thursday. We were all really hoping that she would be able to move forward and be able to eat more then just pureed food and thickened liquids. Unfortunately all she did at the appointment was cry...she didn't want ANY of the food that was offered to her or anything. She didn't get her morning feed so she should have been hungery and WANTING to have food! It was so frusterating. I think it was because of the chair that they strapped her in...but they said that she HAD to be in that chair to stay in the picture...it seems like catch 22.
I asked what they do now and how long I will have to wait for a new appointment...becuase she was not cooperative with this appointment and didn't eat anything they do not need a referal for another appointment with them...and they are willing to have Anniek come in for some "lunch dates" as many as she needs to feel comfortable with being in the chair and in that room and they work as slowly as Anniek want to move towards eventually being able to repeat the study. The good thing is though that when she is ready to have the study repeated they will make it for the week after they think that she is ready and have an appointment a couple days before the study!
Hopefully she will not take too long getting used to the room and every thing...other wise parking is going to get very expensive this month...lol

Broken Arm

Anniek was standing on the chair which I have told her like 101 times not to do...and she got up and stood on it while I was doing dishes...I came back in the room to check for dishes in the living room and she was standing on the chair again so I said "get down" and I guess she lost her balance because she fell and when she fell she put her hand out in front of her (like everyone does). She was crying and holding her wrist so I was like can mommy see it and she would cry more when I went to look at it and say "NO...OWWW" so seeing as it was her right hand I got a marker and was like want to color to get her to reach for it...and she went to put it hurt to take it so she switched hands so I thought that I better take her in. We were only there for like 2 hours :-O They fast tracked us to x-ray when we got there and that took longer then getting the cast...It was more of a wait to be registered after triage (45 min)! She broke her arm on Monday (July 14,2008). On Tuesday whenever she looked at her arm she would start crying, but now she is starting to use her arm again and she holds it out for the day care to wrap it (like a big girl) when they have their outside time.

No Cardiologist

Anniek had her cardiologist appointment today (July 10, 2008). Unfortunately her cardiologist as well as the other one left to go out west, so she doesn't have a cardiologist at the moment. She will be getting a new one in the fall. We saw Liz though instead. Anniek is up to 25lbs now...WOW She is almost the weight of a normal toddler her age! She is also starting to eat more. Her LPA is still a bit narrow...but the temp cardiologist is happy with it for the mean time and she doesn't have to go back to the cardiologist for another 6 whole months! Then we will be able to meet the new cardiologist too. I hope that the new one is as good as her old one that left.

Another Cath

Anniek had her Cath on February 13th 2008, exactly 2 years after her diaphragm surgery! She only had to stay over night and did very well. It was nice to see some of the nurses again. Hopefully this cath will work better then the other's. The doctor that did her cath said that her LPA had to be widened in a different spot then it needed to be done last time...so that was a good thing to hear. Hopefully at her next cardiologist appointment he is as happy as the cardiologist in Toronto is with the looks of her LPA.

No Beds Available

I was told that the cardiologist would be talking to Toronto once again about Anniek’s LPA and that because there had already been 2 previous failed attempts widen the LPA that they would be talking about weather it would be better to do a surgery or another cath to correct the LPA. I found out a few weeks later that Toronto would like to try doing another cath. So the cardiologist sent the referral in for a cath in September of 2007. It seemed like forever for us to get another date for a cath, but we finally got one on February 7th 2008. We went to the pre cath on the 6th and we were informed that there are no beds available so we will have to rebook the cath. We had driven up the night before to avoid a snow storm and now we had to drive back in it, we were not impressed at all.

Fundo

Anniek had been having problems with throwing up off and on since she came home from the hospital. It was not a “normal” baby throw up, but she would throw up the same feed every day. Anniek would throw up until her tummy was empty and if she was getting fed still while she was throwing up she would keep throwing up as more food went in! No medications seemed to be helping with the throwing up so in November of 2007 Anniek had a fundoplication to help with the throwing up problem. After Anniek had her fundoplication and came home from the hospital she seemed to want to eat more and would not throw up nearly as much as she did before the fundoplication.

Victoria Day

On Victoria Day 2007 Anniek was running around at my grandparents and she tripped and fell. She got a cut in her forehead big enough to need stitches so we had to bring her into the hospital. I told the nurses that she would need to have Antibiotics because she is a heart baby before she got the stitches done. We were seen very quickly but I was very annoyed when the student doctor told me that she didn’t think Anniek would need them! I told her that I was told by Toronto that she would and that she had to have the antibiotics to just get her ears pierced, so why would she not need them for the stitches. The student doctor then paged Anniek’s cardiologist to find out if Anniek needed the antibiotics or not and after he confirmed that she did she put an order in for them. I find it so annoying when people think that they know things and they don’t. Parents know their child best and know what the doctors have told them that their child needs!