Wednesday, 24 October 2012

Plays of the week! Oct 17th-Oct 24th

Plays of the week!
October 17th-October 24th
  • Landyn hit the 9 week mark! He is looking around more and making noises when looking at toys. His fingers are winding up in the toys on his chair which is cute!
  • I had a night with a few moms and moms to be on Friday night! Addison and Landyn attended but it was still nice to have some adult mom conversation.
  • We had a wonderful lazy day on Saturday we didn't leave the house. We babysat Jared and Charlotte for a few hours! Four kids was fun...twins next time.hahahhaha
  • I had an afternoon to myself on Sunday! I went for a massage(much much needed) and then for some shopping therapy with Alicia. We got some awesome deals and I was loving life. It is probably a good thing the stores close early on Sunday or I may have never left!
  • Addison's reflux is not getting any better. The Zantac we added isn't doing anything at all. We have stopped giving it as of today. 
Beware.....We are trying to make sure that we have lots of pictures of Landyn just like Addi does from when she was a baby! Below are a few of our photoshoots!

Even Rona wanted to join in!

Tyler and the kiddies after their baths!

Wild Child...It looks like he is planning something big...I wonder if big cousin Jared is teaching him tricks!!!! Like hiding goldfish in the corn popper ride on car:)

Good Morning Mom!

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His little girl!

Love them!

I love her to pieces!

He is just too Handsome!

This week we had two days of appointments so Tyler was off Monday and Tuesday. 
There was a lot of information discussed and I think I still have a headache:)

Monday we had Cerebral Palsy clinic....this consists of us sitting in a room that is 10 x 10 with two children and 8 adults...consisting of various therapists and doctors. It is us who does most of the talking because they want to know what is going on with us over the last year.  (Might I add that in this tiny closet of a room I had to feed Landyn, forgot my cover up, and he had a huge poop that went up to his neck!!
  • They are putting in a referral for another swallow study to see if she aspirates.
  • We are getting AFO's which are ankle foot orthotics.
  • At some point next year she will be getting a gait trainer(walker)
  • Unfortunately Addison had a hip x-ray to see how they were doing. Children with CP with high muscle tone can have many problems with their hips. Her brain tells her leg muscles on the inside of her thigh to tighten and therefore the outside muscles are weak and become stretched. This slowly pulls her hips of out of joint and can cause irregular bone growth and painful hips when older.
    We had an x-ray in March and another one on Monday. When the two were compared in that short time they got significantly worse. Her hips are partially dislocated. We saw it on the X-ray and they were out almost 3/4 of the way out. The doctor feels this should be done within three months but realistically with waiting lists it will probably be more like six. 
  • We went to have her portacath accessed as we have to do once a month
  • We went to see her doctor regarding blood pressure. It was still good even though we have reduced her dose to half a tablet instead of three quarters of a tablet. We continue this for four more weeks, go have it checked and if it is still good then we are done!!!  There is a chance her blood pressure may spike when she is a teenager! 
  • When we left there we went to a daycare called Wee Care located in Halifax. Over the last couple weeks we have been talking about how I would like to have more time with Landyn. Our situation is very unique compared to our friends. Although I am home everyday with him I spend a lot of the day with Addi. She requires a lot of therapy, feeding etc throughout the day whereas a typical child would have independent play time where the Mom can be with the baby! We also feel that Addison needs to have time away from me and get a routine outside of the home. I picked up the phone one day and called and they actually had a part time spot available on Tuesdays and Thursdays.We went and had an interview with the daycare directors, had a tour and we really liked it. It is going to be a huge adjustment for her and I..(I may not stray to far the first couple times I leave her). However, we understand how important this is for her and how much she will benefit from it. They have all the special toys and equipment that she needs and the people to work with her. They have a physio, OT, and a music therapist. I do not look forward to the day I have to walk away and leave our baby girl with strangers but I know we can do it!!!! (After I give them a wealth of information about Addi and I stay with her the first time she goes). This will require me to drive her and pick her up everyday and it isn`t close to home but we do what we have to do for our little girl!
  • On Tuesday we had a genetics appointment. They asked us a million questions, they are doing more blood and urine tests but don`t feel this is genetic but just to rule everything out they are following protocol. 
  • We also met with the dietician and discussed the a new diet for her. We are going to start blending up our food and feeding her through the tube. There have been families in my support group that have done this and had great success. This may be what we need to solve our reflux problems...well maybe not solve but improve! I will do a post all about this when we get started.
  • We were supposed to have an appointment Tuesday with Neurology but since we saw them Monday and not much has changed(although  she had two seizures last week) they said we didn`t have to go.
  • On our way home...while still in Halifax we decided we should go look at Vans that were on sale. This was around noon. Well at 5pm we were driving off the lot with our brand new 2013 Dodge Grand Caravan! It is black in color and we love it! Now we actually have a way to get her wheel chair to daycare next week when we start! Tyler and I don`t waste time! We know what we like and don`t waste time. I will say though when we left home yesterday morning we had no idea we wouldn`t be coming home in the car. It was just too bad that traffic was really bad, it took us 1 hour and 20 minutes to get home and Addison was nothing less then hysterical for the entire drive without one moment of silence. The one plus was getting home to Joel and Sarah already in the kitchen of our house cooking us supper!!!! Got to love them:) 
  • It is only Wednesday but it has been a long week. My brain is very sleepy. We have a busy week still ahead of us! Coming up is Baptism and Bookclub!
Well here is to hoping that next week I can fill you all in on how wonderful it is to feed our child food like we eat!!! And in case your wondering we can even give her a treat now and a piece of cake!! Not that she would taste it but it is just the point:)

Until next time!!!!!!!

Never forget....

"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

Tuesday, 16 October 2012

Plays of the week (October 9th-October 16th)

Plays of the week

  • We had playdate last week at Auntie Debbie`s house!
Landyn and Kasey

First time in the big tub!

  •  Apsea came to visit and we met our new Apsea teacher. She will come to our house once a month. They took her board because she is too big for it and her hanging frame. They are going to put new stuff on her frame. They also want us to use of water mat with warm water, new colors, change her toys up, black reading stand, and her wheel chair more. They said that if her body is supported she will use her vision more.

Apsea brought Addi a switch that she uses her head with. We are not sure what we think of it yet.

Hanging out while I make muffins!

  • We went to the Randall's for Thai take out Friday night!!!

Addi and Ava having a bath together!

  • We went to the Wiggles on Saturday with Birgitt ans Sophie! I wanted to go to see what Addison would think. I was worried she would fuss and not enjoy it. Boy, I was wrong! From the second they came on the stage till the finished she was happy. She smiled and laughed the whole time. Really the bright lights and loud noises were perfect for her!

Ready for the Wiggles

The girls ready for the show

She loved loved loved it

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  • Sunday we had a day at home with a quick trip to town! We made a great supper of Chicken Crunch and Rice Pilaf!

Lazy Sunday

A strap to help her sit in the cart. It is not ideal but it makes it possible to go out with her in the cart!

Can you say spoiled. He took the blanket off Addison's wedge and made himself comfy

  •  Alicia and Ava came to visit Monday! We used Addi's lightbox and did some finger painting!

Ava trying to make Addi feel better!

Finger Painting

Ava was pushing Addi around the house.

  • Playdate was at Fallon's house today! We had fun but Addison did have a seizure. Hopefully that is it and we wont start having more!
  • Landyn now can hold his head up and look side to side!
  • Landyn turns 2 months tomorrow and we go to the doctor for needles!
  • Landyn is doing really good at night. We have had a few nights where he is only getting up twice and one night that he ate at 9 and not again till almost 3!!!! 
  • Landyn loves to sleep in his swing during the day!
  • Addison's reflux has been really bad. We started her on Zantac but are noticing no difference.
    We can't seem to get her to bed before 10. We put her in there and she grinds her teeth and tones really bad. We have appointments next week at the IWK hopefully we will get this figured out.
  • Addison is now starting horseback riding with someone different on a horse named Sunny!
  • We had found the first riding place from an episode of Live at 5(our local news). They had done a segment on this company that does this great therapeutic riding and had children on there that had made great improvements. After watching it we decided to try it out. Unfortunately I put all my trust into the news and didn't investigate the company. I was fortunate enough that I know someone who lives in Truro who contacted us to tell us after finding out who we were riding with to tell us that it was a scam. She wasn't qualified to do what she said she could do. I did think it was awful cheap, weird that she didn't require a helmet and was very young. Next time I will go with my gut. But in the mean time we have found a new actually certified person. She is going to take us to get sized for the proper helmet!