Wednesday, 30 November 2011

Day Three of CME

It is hard to believe we are half way through our trip already. We woke up to snow flurries and our fingers crossed that it wouldn't get too bad and cause the 401 highway to be backed up. It didn't turn out to be too bad.

You can't really see the snow but it was starting to stick to the road. 
This was the lovely 401 traffic this afternoon! Good thing we are not on the highway for a long time
The first session of CME was typical Addison after not getting enough sleep. She cried for about 80 percent of it. Simona did exercises with Addison sitting on the corner of the table, sitting on a box like a genie, and standing with only support on her thighs and not her trunk. Simona is seeing Addison do things that she wasn't able to do at the beginning of the week. Now Addison isn't doing anything that she wasn't doing before but it is the small things that we are working on now that will eventually build up to the big steps we all hope to see. Like good head control and un assisted sitting to start.

Simona said in her 15 years of experience she has never met a child with as severe of damage as Addison with as much fight in her. Typically children with such severe damage typically don't have as much drive to get through the therapy. She looks forward to working with Addison and seeing the progress she makes. Does this mean Addison will walk one day...well no but it doesn't mean she wont. Know one knows that but Simona does feel we will make gains and take steps forward in whatever direction Addison is ready for. Basically the CME therapy is nothing short of a miracle. If all it does for Addison is make her head stronger and teach her awareness of her body so be it. When we walk away we will at least know we tried.
Also, we have talked to Simona and we are coming back to Toronto for CME therapy in May and then again in November(once again thanks to all who supported us and made that possible)
We started video taping the therapy this afternoon with instructions on how to do it at home. Of course it will take time to get used to but nothing we can't handle. Tyler needs to build us a special table which then we will have to find a spot for...I really think it is time for a new house.
We call this the genie
This if four point to side sitting
She is not a fan of this one it is called Forced Squatting
This is called Remote Control Sitting

On a lighter note we took Addison to Yorkdale Mall today to see Santa. We got her picture done. It was kind of funny, when we were walking up to Santa I put her wheel chair right in front of him and Santa was like no move her so she doesn't see me. He must be used to babies seeing him, getting scared and crying. I didn't really say anything but I was way Addison loves the colour red, I am going to let her stare you down as much as she wants. She really didn't even notice him. He held her on his lap awkwardly I don't think he ever held a baby with high tone because he really seemed scared at how she was stiffening up. Quite entertaining for the minute it lasted.

I think Addison might be teething again. She is drooling a bit more then normal and when we went to the food court at the mall for lunch she screamed the entire time I tried to feed her. If you have never been to the Yorkdale Mall you don't know that it is filled with what seem to be very wealthy Moms and babies, business people and people dressed to the nines. I didn't see a stroller that was a regular brand and the babies had more brand names then I do(like really ugg boots for babies). So needless to say when we were sitting in the food court eating lunch with our child who came in a wheel chair, feeding her via a tube and screaming hysterically as I try to eat my lunch as if none of this was taking place I was just waiting for someone to say something snotty to us. It didn't happen although there was no lack of people staring. I do realize though that people are curious and totally respect that.

Before therapy this afternoon we drove around the neighborhood to look at the houses. Let us just say we found a few that we wouldn't mind living in!!

Addison hanging out in a booth while we had supper
After supper(which I must add this eating out business is not as fun as it is getting very very old) we took Addison swimming which of course she loved.
We are hoping Addison will go to sleep soon(so far CME doesn't help with the sleeping) so we can watch survivor and get some sleep.

Tomorrow I start doing the CME which kind of makes me nervous but Simona is great and I am sure it will be fine!! We have decided we are just going to stay in the hotel all day tomorrow between therapy and in the evening, hopefully go to the pool twice and get caught up on all of Addison's other therapies that have been on the back burner since we got here.

Day Two of CME therapy

Yesterday we woke up to a yucky rainy day in Toronto. Addison woke up in the middle of the night and we put her in bed with us and surprisingly she slept in until 8 am which was a great treat for us. Still only gave her 8 or 9 hours of sleep. Our second day CME session did not go as quietly as the first. Addison screamed for pretty much the whole first session. It was sad to watch her like that but at the same time it is just so awesome to see how it makes her work. Simone does each exercise five times and it was amazing how by the fifth time Addison was doing better with it or doing it quicker then she was the first time. 
She eventually stands in this exercise

Tyler uses his hands to help her get up because of her weak trunk

He lets go and she has been getting better at how long she lasts standing there

The second session was better. Simone started with exercises she felt Addison would like which helped and she only ended up crying for 25 minutes. She is working on exercises that involve Addison's trunk, sitting and standing.

After Addison worked so hard in the sessions we were happy to be able to take her in the pool. She loved it she kicked her legs and floated all around. If only we could have a pool closer when we are home I feel she would benefit so much from it.

As some of you know I am part of a group on Facebook called Hope for HIE. This is the group where I found out about CME therapy and a lot of the other things we do with Addi. There are lots of days that I don't know how I would make it without the people in that group even though I have never met them. Last night we were so lucky to be invited to go visit Fiona from the group and her family. They live in Toronto and also do CME. We went there(in major 401 traffic with a screaming child) but it was all worth it. They are amazing people. They have a little boy who is almost 8 months old and is cute as a button and has similarities to Addison. We spent the evening getting to know one another, eating some wonderful food and ending with a photo shoot!! It was so nice to talk to people who know what we are going through. We look forward to seeing them again when we come back and hope one day they will come to Nova Scotia to visit us!!!
Fiona, Addi, Zach and myself

Addi was loving cuddling with Fiona she was giving her all kinds of smiles
He does the lip like Addison
New Friends!!

We didn't get back to the hotel until late so sorry for not doing the blog post last night!!!!!! 

Monday, 28 November 2011

Day One of CME therapy

Today went better then we could have ever imagined. We were expecting Addison to scream the whole time which could induce seizures and make her very irritable. Thankfully, she actually smiled her way through the first session! We go to Blue Balloon everyday twice a day at 10 and 3. Today our first session was the initial assessment. She told us that she would be focusing on trunk control as her head control is pretty good. She feels that the work she needs on head control will come along with the trunk.
For the first half of the week she just works on Addison and for the second half of the week we start the training and video taping. Simone our therapist is the most highly trained CME provider in the world besides the man who created it. We feel very fortunate to have her as our therapist.
Addison not looking happy but she really didn't cry

We need to build one of these tables as soon as we get back

She loved this position

She does very well with it

These videos show some of the exercises that Addison does at Therapy

We spent the rest of the day at the Yorkdale Mall. It is huge and we enjoyed shopping. We went to the Rainforest Cafe for supper which didn't turn out to be as good as we had hoped but was designed very neat.
At Rainforest Cafe

We spent the rest of the evening in the hotel. I did our laundry after going to four different floors to find it! It is 10:50 and Addison is still awake....yawn Hopefully we will get some sleep soon.

First hiccup of the trip- Hotel switch after one night

Well we had quite the morning! 

Last night as you can imagine was very overwhelming. We drove to Toronto with Addison screaming at the end of the drive, checked into a hotel room which seemed sketchy but we tried to remain optimistic. I cleaned the bathroom, the coach, table and got fresh towels. I un packed all of our stuff to try to make it feel like home. Tyler was not happy with it and said he felt like we were in a dungeon. After we got settled we went for a drive to scope out our home away from home for the week. It was in a decent area not much around for food but I mean in Toronto you are never far from anything. As the evening went on it just wasn't growing on us. 

When we got up this morning we felt plainly gross and dirty. I mean you couldn't even open the closet door because the door knob was broken. Although we aren't here on a luxury vacation we do need to feel like we have somewhere to go and relax after our days which have the potential to be rather stressful. I went to grab a bowl to have cereal for breakfast and it was full of dust. That was it we don't live like this at home we are not living like this here.

After my shower I went out to the front desk to ask what they would do to compensate us. The woman was very rude and said she could not do anything. I asked her for the manager and she said she was.  I told her we felt we should be reimbursed for last night and then we would stay for the week if housekeeping came and cleaned our room. She wouldn't have any of it, I then told her we wanted to leave today and wanted our money back now for the rest of the week. She said no to that as well. Then for some reason I told her we were going to Blue Balloon clinic and I would be telling them not to recommend their hotel anymore....well it was like I flipped a switch. Suddenly she wasn't the manager she had to call and see what they could do. She called down to the room a few minutes later offering to pay us back for last night and give us free breakfast for a week. At this point we realized we didn't want to be somewhere where we were treated so poorly. As Tyler put it, if he would have went out to complain we would have got nothing because he would have walked away. I had to be a bitch and put my foot down to get us what we deserve. So we got our money back for the rest of the week and we are gone from there. It turns out I should never have went with the easy way and just go where recommended for cost efficiency. We are staying at a Holiday Inn in York Dale for only 40.00 more a night. We have a deck and windows and we have a view of the LARGE York Dale Mall which we can walk too. We have a swimming pool in the hotel and lots of different places to eat. No this trip isn't a "vacation" for us but we are going to make the best of it and now we feel like that is possible. Nanny and Poppy Halloran are sending us Addison's special swim ring so we can take her to the pool which will help relax her muscles which will be working so hard in therapy.  

We feel a strange sense of sense of relief and can now relax!  

Sunday, 27 November 2011

Addison's First trip to Ontario (Friday-Sunday)

First ones to board the plane! 

Watching her favourite video on the IPAD

Addison has been an angel for the most part on our trip so far! We flew out of Halifax mid morning on Friday and Addison was in an excellent mood. She spent the plane trip smiling at us and just taking in all the sounds of an airplane. She didn't so much as even make a peep. We even fed her, changed her and she had a 30 minute nap. We were more then happy. 

Once we got off the airplane we had to get our 6 pieces of checked luggage, on top of our two carry on bags, wheel chair, diaper bag and cooler of meds and formula. This brought us to the realization the 4 door compact car we reserved wasn't going to work!! We ended up renting a mini-van. Tyler has never been a fan of vans but he is enjoying driving this one. It is fully loaded and has a built in GPS which makes life so easy when travelling. He realizes that one day we may need a minivan and this has help him get over his attitude towards vans.

We spent Friday and Saturday night at friends of ours Matt and Jody who live in Brantford. It was a great weekend full of babies playing, crib games, yummy food and a Santa Clause Parade. Danielle is their 2 year old daughter who we enjoyed seeing again. Addison was laughing out loud at the parade when the loud sirens went or the big trucks honked their horns. She lasted the entire time and got to see Santa at the end! 

Danielle liked to help!

Addison was like a doll for her

All ready for the parade to arrive

Sunday morning we got up and left to go visit with Uncle Kenny, Jenn, Cole and Matthew. We got to spend a few hours at their house we wish we could have stayed longer. Matthew made lunch for us while we were there which was delicious. Addison got lots of cuddles from her Auntie! I happened to fall in love with their dog Angus I wanted to bring him home to Tank!

He smiled for the camera


Jenn and Matthew

Cole and Addi

After a great visit with family we headed off to Toronto to get ready for our big week. We stopped at the grocery store to get some munchies for the hotel(not that I need munchies, this trip is not good for the waist line). Of course our child who has done amazing travelling so far decides that when we hit the 401 highway that she would go hysterical and cry like there was no tomorrow. After much frustration we made it to the hotel safe and sound and when we pulled in the parking lot she smiled.
The hotel we are staying at is not for luxery it was just a place to stay that didn't break the bank. It is called the Maryam and seems not to bad. They just laid new flooring in the main room but unfortunately they didn't do a great job cleaning up all the dust. I spent the first 30 minutes completely wiping everything down with cleaner(which I bought on the way just in case)

Entry way with Addi hanging out


We went for a drive to find the Blue Balloon Clinic where Medek therapy begins tomorrow. It took 5 minutes with no traffic today. We will see what tomorrow brings for traffic. Our therapy is at 10 and 3 daily!!!