Oh how things never change

The title may be deceiving, but what I mean is the problems seem never ending. However, this is not a sad blog, it is one of motivation.

So, on Monday May 17, 2010, we headed at 6:30 am I may add to Sick Kids in Toronto. We went to the GI/Nutrition clinic. We didn't even have to wait that long ;) The nutritionist and doctor agreed that Briar is not gaining weight, in fact she is losing weight especially in the last 4-5 months. I was aware of this because her clothes fit better now than in January. Anyways, she is currently 75 cms long and 8.51 kilos. The nutritionist said that is about 2 1/2 feet, 18 1/2 lbs.

So the doctor asked us a lot of questions about Briar and her eating habits (throwing up 10-20 times a day, eating 3 bottles and some pureed foods, medication and digestion) After gasping at the amount of times she threw up (Charles and I laughed although it's not funny) he had three recommendations;

1. New medication - It is similar to what she has been on but more powerful. It is a special order medication and they have to get permission to prescribe it. They also have to locate a pharmacy that can make it or ship it to us. Because of the side effects of this medication, Briar had to have an ECG of her heart and blood work. We are just waiting for the results. If all goes well, the doctor thought once started, we would know within a week if it is working or not.

2. A Nissan Fundoplication - sound familiar? Briar has already had this surgery and the doctor said that although it is an option, that in children with neurological disorders, it usually isn't successful. So he doesn't recommend this one

3. A GJ Tube - This is a tube that is placed through the stomach into the small intestine (jijunum) and food is fed through this tube. Because the small intestine is much smaller than the stomach, the process of feeding will take much longer. But when I questioned the doctor about feeding her orally and then possibly just tube feeding at night, he said this is an option. I am excited about her possibly not regurgitating as much, but really undecided about how this will affect her life in the long run. We have a lot of thinking to do, but as always Briar is the best that she can be and we love her more every second!!

So I will update about the stroller in the next post!!

Anything you can do, I can do better, I can do anything better than you! (No you can't, yes I can)

Well next week is a cRaZy week LOL I guess I should mention that they are all crazy with Briar, but this one is especially.

Monday - GI at sick kids (third times the charm?)
Tuesday - Recreation and Seating clinic (YAH!!! Been waiting so long for a great stroller to support Briar)
Wednesday - Off work because E and B don't have day care (Good luck in Germany Cait!! We will miss you so much!! )
Thursday - Another CHAP meet and greet (where we will hopefully find a respite worker)
Friday - Wedding rehearsal for Cole and Alicia
Saturday - My little brother gets married!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With regards to B, things have been going well. She is adjusting beautifully at Shelly's. She has started homo milk and a sippy cup twice a day. She is really getting good at holding her head up. She is taking a little break from physiotherapy. Mostly so I can work full time for a few weeks, but also because it's nice to have a break :) She is sleeping well and not up coughing all night. We almost made it through the spring without antibiotics too... oh well, she is feeling better now.

My friend Carol and I were just talking last week about the "first" time someone would ask me about "what does Briar have?" Well it happened last weekend. Helen and I were out with our girls, and the owner at Playstreet (who was so nice) asked Helen how old Briar was. Carol and I thought this would give her away hehehehe, anyways when Helen told him, he approached me and asked if Briar liked balloons. I said, yes... shiny ones :) He then asked me a few questions and we talked about Briar . It was such a nice first experience with "why is your child different?" but funny how we observe those around us. He went on to talk about his daughter going deaf at 4 years old and how she now has a cochlear implant. I was amazed at his openness, he has obviously been doing this for longer than me. I, however, am learning. I'll post with a lesson when I learn it LOL

Did I mention my brother is getting married next week?? This is crazy and amazing itself. We waited a long time for him to propose, but I always said "My sister in law, Alicia...." HAHA Anyways, I will post a few pics after the wedding. This is so surreal to me, but I am ready.... I hope you two are as well :)