Tuesday, 5 June 2012

May 9th- June 5th

May 9th-June 5th Update!

Over the last month we have had lots going on.

It started with seizures. On May 9th I got a call at school that Addison was having seizures and it ended with me leaving in a hurry and an ambulance drive to the IWK before they could get the seizures stopped. It was not a pleasant experience but it has happened once a month so it was all very familiar. Standing in the trauma room in the ER watching your little girl seize with people everywhere doing all kinds of stuff to her is nothing less then traumatic but we just stand back and know that it is best we don't get in the way. Once they finally get her seizure stopped we don't leave her side. This time they had to give her a drug called phenobarb to get it under control, she had that in the NICU. The sad part of the whole experience was that the ambulance that came to the house had two paramedics and neither of them could give medication so we had to drive as far as Preston and another ambulance was waiting for us and a paramedic that could give meds jumped in with us. The meds didn't stop the seizure but not very comforting that it took that long to even try. We were admitted but got to go home the next day because she wasn't having any more seizures. They have no idea why she has a bad one a month and said it isn't typical but just seem to leave it at that. I guess they don't have to deal with the stress of it so why problem solve. We did put her keepra up to 5 mls twice a day instead of 4. 

Her Infantile Spasm seizures got worse and we had to increase her medication to 15 mls twice a day. 

She started having different seizures. This time she gets very stiff, cries a bit throughout them and does the odd twitch. I have yet to get an answer about what kind they are or what we are going to do about them. She had three last week and one this week so we will see what they say when our doctor gets back. The ketogenic diet doesn`t seem to be doing much for us so we might just get rid of that. It isn`t work the hassle if it`s not working. 

Addison is up to 5 oz at a time for her feeding's which is a huge milestone for us! I hope to move her to 6 oz next week and if it works we are done with the pump and overnight feeding!! Right now she is getting 4 oz at night. I am trying not to get too excited to sleep without being woke up by that thing beeping. 

We are settled into our new apartment and the house is moving very fast! Insulation was supposed to be finished today...which means this weekend Tyler might actually be home with with us!!!
We are getting spoiled living next to Helen and Leo though! 

I only have 16 more work days left until summer vacation! Jobs are looking scarce but it is all about a seniority number so I am trying not to think to much about it!

It is baby shower season. Addison and I have been to three so far and have two more on our list! So fun seeing all the cute baby stuff. 

Addison got her new stander which she is supposed to be in a minimum of 1 hour a day but not all at one time. She can be in it longer if she wants too! She seems to like it if in a good mood. It does make her tone in her arms but at least it is good for her legs!

She got her new lazy boy chair! I love it!

Pregnancy is going good right now! I am gaining lots of weight and baby is very big. They are keeping an eye on that to make sure he doesn`t get too big. I had to have an extra diabetes test done but I passed it thank god. 

Addison still doesn`t sleep. She does good to get 5 or 6 hours broken up with a few naps during the day. We tried chloralhydrate for a week straight but that did nothing so we stopped giving it to her. No one seems to be helping us with this problem. The last I was told was maybe this was just going to be this way. 

Addison laughs when you tickle her if she is in a good mood. 

Addison loves to be outside. Almost always when she is fussing if you take her outside she will stop. I am not sure why but whatever works...just hard when it is cold, rainy and night time(can`t handle June bugs). 

Auntie Debbie is going to have her baby very soon and we are excited to meet baby Charlotte!

Me and my girl

Addi and her big bro!

The drive to the Nutby cottage while it was still quiet.

Cool dude

Look at the toes

What a happy girl!!

Ava loves to give Addi cuddles

Playing with the fish on the Ipad

Nap on the deck at Auntie Debbie`s

First swim of the year

We were out at yard sales and she got heavy so I bought this for 3 dollars I was impressed with how well it supported her.

SO cute

Night time movie!

Why haven't I updated my blog in almost a month you ask?

There are lots of things in life that we all take for granted at one time or another until you meet reality square in the face and have no choice but face the challenges that life can bring.

October 1st 2010 was the best day of my life and the scariest. We welcomed our first child Addison Marie Halloran into the world but then watched her be worked on and be taken away from us not knowing what was wrong and we didn`t know for many days to come.

I will say it was all a big blur and I had no idea at that point in time what this meant for our future. Probably at this point in time I still only have a small idea of what our future holds but I definitely know it isn`t going to be easy. Is it worth it? Of course it is. I wouldn't trade Addison for anything in the world. Do I wish she could do the things her peers do, well of course I do I am human!

Well as the title of my post states I am going to discuss why I haven't had a chance to update the blog.

When you have a child with special needs like Addison a day in our life does not resemble the day of a typical child of her age.

What do you do when you wake up?

I guess you cuddle a few minutes...or maybe not they might run right for the toys. You make breakfast, feed them, do dishes, make beds, get ready for the day etc. All the while your child is playing, watching tv, or at your feet driving you crazy.

What do we do when we wake up?

Well there is never a fear of Addison still being asleep. We then pick her up, take off her tube, put her in our bed, turn the IPad on one of her videos and pray she will watch it for a bit so we can lay there and just close our eyes(as the night before definitely was one of no sleep we get 5 hours broken up on average). However, we have to judge Addison's mood on how long we actually get to lay there and relax because this may be the only time for awhile that we can get anything done...feed ready, medications mixed and drawn up, any tidying...etc...oh and maybe eat and have a shower. Now when we are both home this is easier because one person can do the work the other can watch Addison but as you know we are building a house and Tyler has been working every weekend so I am alone.

During the day.....
I guess your children play, play and play some more. They probably whine when they get bored, or they want to do something you don't want to do or they are too young to do. They probably get cranky when they are tired, they probably talk to you, want you to play with them, bug you when you are doing house work, or even just want to sit on your lap and read a book.

What we do during the day?

Feeding, Meds, Peg to start the day.
Stander for a minimum of 1 hour
Time in wheel chair
Tummy Time
Sitting time
Oral Therapy twice a day minimum
Light box time
Read to her
Sing to her
Time with her spotlight lamp

Sure that sounds like a busy day which it is but what makes it hard is that Addison is not always in a good mood. This stuff all is worked around the fussy periods which seem to be more and more common.
We spend a lot of the day rocking, bouncing, and trying to get Addison to be happy. Now I don`t want to make it out that she is miserable all the time so people judge her but she has her moments. She has a lot going on and we don`t always know the cause of the problems.

In the evening(which are worse when I am alone)

I can bath Addison, read to her, get her all ready for bed but guess what that means....ABSOLUTELY NOTHING. She doesn`t go to bed at any particular time. This week it hasn`t been before 10 pm. So a positive is I get to spend lots of time with her after being at work all day but a down side is I get nothing done because by 6-7 pm she is tired like most kids and cranky and ready for bed.
She will go in her crib and suck on her soother for so long then gets bored and arches really bad so we have to take her out, or sometimes she isn`t happy unless he is held and being bounced.
I literally can`t go pee, or do a darn thing without her crying or worrying that she is arching or having a seizure in her crib. I get no time to myself. You know how we all have those days when you would just like to sit down and relax for a few minutes alone.....Most nights I am in bed and eventually just fall asleep with her in her crib awake. Sometimes it is too late and we will put her in bed with us so at least if she gets in a weird position or has a seizure we will know.

So right now it is 8:00 Addison has been cranky since 6. She is in her crib, I have music on for her, she is bored and arching all over the place, making cooing noises now and then, but at least she isn`t crying. I am standing in the room with her typing this because if I don`t do it when she`s awake I never will.  She will probably fall asleep but it will only be for 30-60 minutes and then she will be up for an unknown length of time.

I worry about what September will bring when I have an actual newborn and then Addison who requires sometimes more care then a newborn. I know somehow I will survive and it will all be worth it but I am aware that hard days are ahead.

I guess I had to write this blog post because it is my way of venting without getting into a fight with people on facebook who do nothing but complain about everything and anything.
 I just would like them to live one day in our life and maybe they would have something to complain about. Like why did you have kids if you couldn`t handle it....If we are managing with smiles on our faces and love in our hearts...why can`t you?

Yes we all need to complain at some point and time and before Addison came along maybe I would have been the same. But now that I have a total different perspective on the word "hard" I am more cautious about what I say. This is why I am writing this here and not on facebook..I don't want people to feel bad for me or to worry about complaining to me. My real friends know that they can say whatever they need to to me as sure they do have bad days too. Just had to get it off my chest.

Just remember next time you have a moment to yourself to cherish it in every way because it isn't always possible for everyone.

Thanks for listening,