Monday, 19 December 2011

Plays of the week (Dec 12th- Dec 19th)

Plays of the week!

Addison at the IWK. It was my first time going to an appointment alone.
She did great! 

  • Apsea(Vision teachers) came to the house for a visit this week. Told me that I need to do flashlight therapy four times a day not the one time that I was doing and when I was reluctant because we already spend hours upon hours doing therapy a day his response was "well I do things I don't like during the day also".....And that was his last visit to our home. If he can't have enough common sense and empathy to be realistic about our life he can get the hell second chance for him. I have drawn the line.
  • Wednesday we had an appointment with Neurology and an EEG. This was a regular scheduled appointed but we were noticing different kind of seizures so that is why the EEG. The EEG machine was broken which they didn't figure out until they had Addison hooked up to the machine so she had to lay there for an hour waiting for them to fix the machine and then for another hour for the EEG. Let's just say it was a very trying two hours. In the end we met with the doctor Addison had multiple seizures in her office and she was diagnosed with Infantile Spasms. This is a bad type of seizures that we hoped we would never ever have to worry about. It wasn't a good day but in the end just another piece of our puzzle that we accept and move on. Addison started the new meds on Friday which do have some negative visual side effects but where Addison has CVI we opted for it anyway hoping to get them under control rapidly. We increase her dose tomorrow and hopefully wont see anymore. 
  • I spent a couple days last week getting my classroom set up for January. I forgot how much work it takes to have an organized Elementary classroom. I got it all done and it looks great! Now to just get something planned for them to do when they get back to school in January!!
  • Saturday was the Annual Christmas Breakfast that I host every year before Christmas. 18 very special ladies come to my house, we have breakfast and then do a game that involves exchanging gifts! We spent Saturday evening with Debbie, Nathan and Jared and a few drinks and take out!!! 
The ladies enjoying their breakfast!
Gift opening!
Cousin love!!!

Jared is too cute!
  • We had physio today and Addison tried out the stander. She absolutely loved it. She was falling asleep before we put her in and she perked right up and was smiling away. We are going back in January to get sized to get one! 
Whats new with Addison
Addison in the stander at Physio
Her's will be pink of course! It matches the wheel chair!
  • She loves her light box with her red pom pom on it and red scarf
  • SHE LOVES LOVES LOVES the sound of bells and sirens or really any loud loud noise.
  • She is learning to watch the I PAD with no sound and today was the first day I caught her smiling at it....that means she is seeing something on the screen!! Go Addi!
  • She has fallen asleep in the car twice this week....that NEVER happens
  • We started using a real toothbrush in her mouth instead of her special ones(we still do those just different times of the day)
  • We are starting to get comfortable with the CME home therapy program. We have the room set up, we each have six exercises we are comfortable with and don't need to watch the video to do. We have decided Tyler will do them in the morning before work and I will do them after work. With the infantile spasms getting under control we are hoping to start seeing progress. 
  • She loves to go swimming
  • She likes the taste of icing and chocolate (shh don't tell anyone)
  • She is happy a lot of  the time now that we are getting her better. She laughs most days. She tries so hard to get it out sometimes she struggles but when it happens it is soo cute and worth the wait!
  • Starting to sleep better. She has been napping better in the last 5 days or so. We are working on getting her to sleep by 8pm and stay asleep until 6am. Not doing to bad. If she wakes up we are not bringing her in our bed.
  • She isn't a fan of getting changed but as soon as you pick her up she stops crying....I call it spoiled.

Tyler, Addison and Brianna in the pool! 
Brianna and Addison shopping at Costco! 
Addison and her Auntie cuddling!

Wednesday, 14 December 2011

"Weebles wooble but don't fall down"

As I drove to town today with Addison in the backseat sucking away on her soother being quiet I almost could have closed my eyes and pretended we were on our way to go shopping to buy special Christmas presents for all our friends and family and not headed to the IWK to have an EEG and meet with the neurologist.  I am not so fortunate. It led me to a long list of wonders.....

What I wonder about......

  • What is it like 
    • to take your child wherever you want, whenever you want
    • to walk through the mall with your child hand in hand
    • to have your child look into your eyes and know they are safe because their mom is there
    • to wake up in the morning and not have to worry about fitting in the large amounts of therapy
    • when your child sleeps in in the morning not having to worry because this means they are going to be late getting their medication and might not get all their formula in for the day that they need
    • to go visit someone without feeling guilty because you should be at home doing therapy and stimulating them
    • to feed your child their favourite foods
    • to not wake up every single night to take your child off the pump
    • to have a shower and play peek a boo with your child who might be in the bathroom with you
    • to plan trips and family vacations that don't involve therapy
    • to wake up Christmas morning and watch your baby play in all the paper or with their new toys
    • to not spend every waking moment worrying about what diagnosis is coming next and how you will handle it
    • to not have people feel bad for you all the time and not know what to say to you 
    • to bake cookies, clean the house, cook supper, or just sit and watch TV while your child plays or watches TV or self entertains
    • to live the "typical life" that everyone dreams about when they start a family

And then I wonder if any of you have ever thought about how lucky Tyler and I are. We have this precious angel with us every day to remind us that nothing is easy and we must work for everything but in the end it is worth it.
We wouldn't change her for anything. She is Addison and Addison is who we love. We love her for who she is, regardless of what she does, says or how she looks. No one ever wants to be the person that no one wants to be and I feel that is us. I don't want people to be scared of special needs. It isn't scary it is just hard. Very very hard and it takes lots and lots of patience. I have learned more from Addison then from any teacher or person in the 26 years of life before I had her.
 I have learned
  • That the little things in life don't matter anymore
  • I had no idea what it was like to have a bad day before
  • Health is EVERYTHING
  • The brain really does control everything we do
  • Empathy is an amazing thing and some people just plain suck and don't have any and I have NO time for those people
  • What doesn't kill you will make you stronger

Like our neurologist said to me today when she gave us more bad news..."Weebles wooble but don't fall down" 
We will survive and we will try very very hard everyday to stay strong and not fall. 

Thanks for listening!

Sunday, 11 December 2011

Plays of the week(December 5th- 11th)

Plays of the week

  • Addison has been laughing a lot and not just for us. She responds mostly to noise. A favorite noise is bells. If we jingle the bells we almost always get a smile and sometimes get giggles. 
  • Tuesday Addison and I went to OPA to see the classroom I will be taking over. I am looking forward to it but realize how much work it is to be a full time working Mom and I am kind of dreading that part!
  • Wednesday we had a visit with Amy, Jayne and Alicia and of course Joseph and Ava too! All the babies were really good and we really enjoyed getting caught up. We are happy that Amy will be home again after Christmas so we can have a dinner with everyone!
Telling secrets to her best friend

Photo shoots are not easy anymore!
  • Thursday we went to Wee bears. I will miss it when I go back to work. I hope Nanny will take Addison!
  • Thursday afternoon I went to town Christmas shopping with Grandma while Addison stayed with Nanny Helen and then Daddy. I put a big dent in the list. Thursday evening Addison had a cuddle with Sarah and Joel! We are hoping it gives them baby fever!
  • Friday we had visitors throughout the day! It was nice to catch up with friends!
Being a cutie pie for Auntie Whitney

Hanging out with the girls
  • Saturday we went tree hunting, put up the tree and decorated. Addison watched us and played in her little room for a bit while we decorated. 
Tank went with Jodi!

Daddy and his girl
Love my family
Joel's cuddle time
Ride on a tree
Cookie time!
The basement looking festive
I love it especially with the new stairs!
  • Saturday night Tyler and I went out shopping! Grandpa, Nana and Great Grandma(GG) came down to babysit! It was their first time feeding Addison alone and putting her on the pump! They did awesome and she even spent 25 minutes laughing at Grandpa making funny voices! We are so glad they enjoyed their evening!
  • Sunday was great! We had brunch with Jill and Chris who Addison smiled and smiled for! I spent the afternoon baking with GG and Auntie Debbie! Good thing Tyler was around to taste the food we would never have known....haha. Addison even had a taste of the icing and loved it! To top off a wonderful week we went to Dads for supper with the family!
Cookie decorating and testing table!
At first she wasn't sure of the chocolate
She loved it. Oh how we wish we could feed her and let her experience the tastes 

Monday, 5 December 2011

Day Five of CME(All done in Toronto)

Last day!
Happy to be all done!!!
Friday morning we got up and packed up the hotel to go to our last day of CME. Simona did the therapy and we video taped for extra reference. For the lack of sleep Addison had she was in an okay mood and didn't do too bad. There were exercises that Simona saw improvement in since we arrived there on Monday. We spent the time in between therapy cruising around and found an Educational Toy Store called Mastermind. OH MY it was a teachers and a mothers dream!!! I got stuff for Christmas and stuff for my classroom come January!!!
We spent Friday night at Uncle Kenny's and Jenn's house having a few drinks and relaxing after the "week". It was so great to spend time with them and catch up.
Uncle Kenny passed out with Addison

The flight home was great! Addison will be a pro traveler by the time we are done going to Toronto for therapy. We have booked to go back in May and November!!

The table and stool we need
What did we think of the therapy?? A common question we have been asked since we got home. We love the therapy and the history of it.  We think that with consistency we will see results. However, to get those results is going to take a lot of dedication, time and effort for us and Addison. Tyler spent Sunday getting material and then building the proper table we need to do the therapy. We had to rearrange the spare room to make it fit. We really need a bigger house we are quickly outgrowing this one. Once we get the hang of it it wont be so bad but for now we have a lot of work ahead of us. The exercises are quite precise as to how they have to be completed so we will be spending a lot of time with Addison on the table watching the videos over and over again. In the end it will all be worth it!
Our new therapy center the grip liner on the table is also for exercises

Thursday, 1 December 2011

Day Four of CME therapy

"If there is no struggle, there is no progress"

I want you to imagine you are taking your baby/toddler/child to get a needle or something done to them that they don't like. Imagine you are holding them as tight as you can while they are using every ounce of strength in their body to get away from you but of course you are bigger and for the most part they can't get away. Sometimes you find this to hard to do and ask for a nurse to do it or have the Dad step in, or maybe a complete stranger because you can't stand to see them cry and then after a few minutes it is all over. Well we have spent the week watching this happen to Addison for an hour at a time twice a day. This morning I had to start doing it. For an hour I had to put her in the positions she doesn't like, do it over and over again while she screamed. This afternoon I did it all over again and this time she was even more frustrated and un happy with what we were doing to her(because she is extremely over tired and isn't sleeping).

I walked out of that clinic today with a feeling I can't explain. We have spent a lot of money to come here, we have booked to come back for two more intensive blocks and now we have to go home and continue this everyday twice a day(30 minute sessions). I look forward to the progress that hopefully will come out of this but I don't look forward to the work it will require from me and Addison. If you have ever had a child in therapy you will know that the child has a special love hate relationship with the therapist. The therapist is there to help them but that doesn't mean that the child likes what the therapist is doing to them but at the end of the session the child runs to the parents arms and feels safe. Now I am that person, the person who forces the child to do the therapy they hate so much and at the end of the session I also have to be the person they run to to be safe. Of course like any other parent would I can't help but worry about Addison associating me with the uncomfortable therapy. One of the many times I ask why were we dealt this deck of cards? Life just isn't fair.

I am smart enough to know that with anything you do it will get easier. I will tell you that the therapy is way harder to do then it looks in the video. Addison has high tone which makes her seem like she is strong and she can fight very good to get out of those positions. I don't have big hands and am struggling to get hold of her as good as I need to. I am a teacher I am the one who teaches people to do things, and coaches them when they struggle until they understand. I am not used to be the one who has to listen, follow instructions and then model what I have learned. Of course as a teacher you always sympathize with the students who are struggling but now I have a new respect. The child who just doesn't understand how to regroup in two digit by two digit subtraction no matter how many times they try, and they know that their mom has told them that if they can just get an A on next test they will get to do whatever it is they want oh so badly and they just can't get it. I was that child today. I tried over and over to get an exercise no matter how many times I tried I couldn't get Addison in the proper position, or I would have my hand too high or low, or be too far from the table, or just plain and simple not doing it right when all I wanted was to do it right because I know what it means for Addison which there is no bigger reward for me then helping Addison.

Did I think this week would take a toll on me? Yes I knew it would be hard to watch Addison cry through the therapy but maybe I didn't put enough thought into how it would make me feel when I had to do it. I do not regret our decision to come. I don't give up and I don't do things unless they are right so I will work and I will work hard to make sure it is done correctly so that when we come back to Toronto in May Addison is ready for a whole new set of exercises and will blow them all away. Like the Johnny Reid song says that we have dedicated to Addison....Today she is going to change the world, taking it one day at a time....

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength" Christopher Reeves

Me and the strongest little girl I have ever met!
Daddy and his girl

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!!!!!!