Well I am happy to report that A is doing much better. I however still feel like my cold is holding on and it has been three weeks! Probably has something to do with being crazy busy, stressed out and not getting much sleep!
Last weekend we decided last minute to head up to the cabin in the woods for a night of relaxing. We got there about 4pm on Sunday and A slept till almost 8pm. He wasn’t too thrilled when he was awake and pretty much fussed the entire time that we were there. I don’t really know why, but all I can think is that it is VERY different for him and he just didn’t know what was going on.
Monday we got up and headed to the beach. However within a half hour of being there it started to rain so we headed into the little town near there and walked around and did some window shopping. Of course once in town the rain cleared and it got VERY hot out.
3pm we headed back to the cabin and A went down for a nap. Daddy and I were able to enjoy some quiet peaceful time in the sun. It was just what we needed to unwind!!!
Well it has been a week since my last post! Friday daddy headed up North to grandma and grandpas cabin in the woods. He went up with Uncle S and Acton until Monday night when they returned home.
Aunt K came down on Saturday to spend the weekend with A and I and we went dress shopping on Saturday. After two hours of trying on dresses I found THE dress! I was so excited and can’t wait until the day that I get to wear it. I can see how emotional the day is going to be already considering that I almost started balling when I came out of the change room and saw myself in the mirror.
Saturday night the three of us headed to dinner with the “Mac Mommies”. Vickie, Shannon, Lisa and Angela were there and it was great to get together. Of course it was the one weekend when no one was available to watch A so he came as well. He wasn’t the best behaved little boy but we got through dinner anyhow. Next time I will be sure to have a sitter!
Daddy, Uncle S and Acton heading out Friday night…
Grandma and grandpa went north on Saturday morning to make some plans for the cottage that they are building and to clear some more bush…
Knocking over trees…
Acton with the ONLY fish that was caught the entire fishing trip!
Uncle S at the dam by the cabin…
Packing up to come home…
Last night A and I carved his first pumpkin. He really didn’t know what to think of it at first but as I was cutting it he was laughing hysterically.
Then mommy made him feel the inside of the pumpkin and as you can see he was NOT happy.
Right after I took that picture he started to gag and threw up. Guess he didn’t like the mush of the pumpkin!
He liked the finished product!
Today I dressed A up and took him to get his pictures done at Zehrs for Halloween. When daddy got home we took him over to have a quick visit with his friends O & A and then grandma and grandpas…
That’s the cutest little devil that I have ever seen!
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….