Happy 2nd Birthday Alina and Sophia!!!
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….