A good week

We started out the week by heading to visit my mom at the hospital in Halifax. Mom has been going through a roller coaster ride through hell of her own when she was diagnosed with small cell lung cancer. The good news for mom is despite it having a very low positive outcome, she has caught it before it spread. That puts her in a better category and doctors are now doing all they can to abolish the nasty beast. I know she will beat it. My mom has a spirit unlike anyone I have ever met. She was just finishing her second round of chemo when we visited and she had the kids sitting up around her and trying on her new wig the hospital gave her and Meggie eating up her pudding. The girls adore their Nana. Their faces brighten and I never see Ava so engaged as when she sees both Nana and Grandpa. Earlier in the week we stopped by her empty house on the way back from an event and Ava looked around the room with a wry smile just waiting for Nana to jump out and say boo! Snuggle time with Nana will be at a minimum as she enters chemo and radiation because her immune system will be so low that a cold could really hurt her. And we all know how germ infested little kids are, I just hope that this time will pass quickly and by summer the cancer will be just a thing of the past.
Back at our hotel Ava started saying Mom! It was such a clear word while she irritably looked at me waiting to be picked up. She continued to say it all day every day since. Other words are starting to emerge in quick succession. The up word made a comeback a couple times. She used to say it all the time but quickly forgot. Until it became um and then uh. Now it is back to up or um but we treat it as up no matter how she says it. It will come. At a joint physio/OT/speech session Ava was across the small room with her physio and I called Hi Ava Hi across the room. She looked at me and said H-iiiii back! Whoa! She has been loving to walk while we hold her hands lately. She walks a bit drunk-like and wobbly but her feet are definitely going somewhere and she has learned to stop and switch directions and even step sideways to gain a better purchase. At her session I held her hands and walked her where she wanted to go. She walked up to her physiotherapist and as she reached for Ava, Ava shook her head no then turned around and walked to her other therapist, again she shook her head and continued around the room playing this game she had created. I loved it! A funny time this week for us was when we put her to bed but about an hour later she woke up and cried to get out. Usually I will just tuck her back in but instead picked her up to have some mommy and daddy time. The look on her face was pure joy as she realized she was free. We snuggled on the couch and she kept leaning her head on my shoulder then jumping up to look at me and then leaning again as if to show me she was giving me a hug. Something I have been trying to teach her as she usually doesn't like to be enclosed too much. A bit claustrophobic like her mama. It was very sweet and I could have done that all night. She started to rub her eyes and so I put her back down to her crib. Ten minutes later she complained again and when I opened the door she popped up from laying as quick as lightening and reached her arms up to me and shouted Mama! With this great smile like I was about to pull her out of bed to play again. So funny! But I shook my head no and she was fast asleep within minutes. What a great night!
We went to her neurologist appointment expecting to fight but deciding to wait to see what the neurologist would say first.
It took me almost a year to get a concrete alacrima diagnosis when all of the specialists were telling me that it was definitely not alacrima.
I sent off emails and follow up phone calls to her team of specialists asking what tests will be done now that we have this added clue. Her neuro nurse (we like to call nurse rachet) called and left a message saying that the neuro didn't plan to do anything but we would 'chat' about that at the next appointment.
I was seething. It sounded like the alacrima would not be explored and the word chat more than irritated me. We were talking about my child's life. We do not chat.
In the weeks leading up to the visit, I posed arguments in my dreams. How I would fight Ava's case.
All the steam went out of me when her neuro's first words were 'I am becoming an expert on alacrima'
Relief flooded me. I am not a neurologist. I can't do this on my own.
We worked through my list (maybe another day I will post my list of things that could fit, but probably don't).
He thought that we should have a barrium swallow test done. His thoughts were for Triple A or Allgrove. I know that is the only one that comes up when they input her symptoms in a computer. http://emedicine.medscape.com/article/919360-overview
She will also be getting a ACTH sensitivity test done. Both of these are important and have been on my list of tests for awhile now.
Another positive thing is that the neuro upon our request, is referring us to Toronto Sick Kids hospital! We will hopefully be going in the spring but that is just a guess. I am so excited. It is one of the world’s leading paediatric health-care institutions and is filled with specialists that aren't available in Halifax.
Developments and moving forward is good. It feels like it has been so long (a year!) since she had any diagnostic work done.
Ava was funny during the appointment. I put her on the floor and she immediately started to reach with her hands and drag her body across the floor (something she really has never done) and then grabbed on to a chair leg and pulled herself into a kneel. She beamed at the doc, looked at me and said Mom. I think she might have been showing off ;)