Thursday, April 2, 2009

New stuff about Hannah


It's been far too long since the last time we wrote anything down here. We returned from New York in January from Hannah's surgery and life has gone full tilt ever since. She recovered really well from the surgery. It's amazing to look at the pictures of her in the days after her surgery and realize how swollen her face was. She was incredibly self-conscious about how she looked when we returned home and very reluctantly returned to school on the Tuesday. John and I were very aware that if she didn't go right back to school that she would carry on wanting to hide her face and we have always lived with her 'face' first. This was a tough one for her though. She was so worried that her friends would see her bandages and point at them and say mean things to her. I was amazed that after going to school for 10 weeks with a pin sticking out of her jaw she was now worried about going to school with a bandage on. Such a funny little duck. But she did it. And the swelling eventually went down. One of our big worries, post-surgery, was that her facial nerve was affected by all the tugging that the surgeons did to remove her distraction device. Her smile was very lopsided and quite droppy on the leftside for a number of weeks and we were praying that it would return to normal. Her surgeon in NY had told us that when a facial nerve has been handled that they can go to sleep for up to six or more months so we just needed to be patient to see what was going to happen. Very slowly it has returned to normal and her lovely big smile is back as it was.
So Hannah's new thing now is the world of orthodontics. She spent 3 hours at our orthodontists yesterday and Dr. Pocock put brackets on a number of her teeth and has fitted her with a new appliance to replace the one she came home from New York with. Now what we are doing is, one by one, her top back teeth on the left side are being pulled down using elastics. There is a little bracket with a tiny hook on the top tooth and one on the bottom tooth and she has to wear an elastic on those teeth all the time. Big sister Becky, who is nearly 15, wears them as well as part of her orthodontic reality - so they are elastic buddies. It's great because Becky is so great at putting the elastics in her own mouth that she can put them in Hannah's mouth at school when they break and come out. Or when she accidentally eats them like she did last night. Becky has worn them for over a year now and I find them all over the bloody house. Barbie shoes and teeny-tiny elastics - they drive me mad! We go back to see Dr. Pocock intwo weeks to see how her tooth is coming along. As the teeth move down bone will just naturally just fill in and the ultimately the gap that is there between her back teeth on the left side will disappear when all of her teeth have been pulled down using elastics - amazing. The other step will be her appliance, which is also a rapid maxillary expander (Keziah and Zach both wore these so we're old pro's at these!) also called an RME, that will begin to get the screw turned and the appliance therefore will begin to expand her upper jaw soon. That will be good as she has teeth every which way up there.
If you are interested in some more information about who Dr. Pocock is in our lives here's the link from the news story that CTV news did about Hannah last June and it features Dr. Pocock in it. Hannah's moment of stardom! http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20080620/BC_hannah_davies_080620/20080620/?hub=BritishColumbiaHome
The other piece of new about Hannah is that we had a consultation with a team of plastic surgeons at BC Children's Hospital in early March. One of the primary things that we wanted to discuss was ear reconstruction. We wanted to know about time line for when it could be done and who is the best in Canada. It was very nice that they did not try to sell us anyone in BC. They were very clear that the best doctor is in Edmonton - a guy named Dr. Wilkes - and the other was a guy in Toronto. He said they can do them in Vancouver but they are by no means the best. We had already done quite a lot of research and had found out that Edmonton was the place to go in Canada so we told them that we would like to be referred on the Edmonton clinic so now we wait for that to go through. She has to be a certain size before it can happen as her chest circumference has to be at least a certain number and she is below that number right now. The doctor thought that it would be about a year before she would hit the number that we would need to see. The reason her chest needs to be a certain size is that they harvest bone from her ribs to make the ear. I explained to the doctors that she really needs a ear as her eye sight is not 100%. She has a stigmatism in her left eye and it is only a matter of time before she is going to need to wear glasses and she will definitely need a second ear for that. Otherwise I would wait on the reconstruction until she says she's ready to do it. With the eye issue though we really can't wait. I tell you there is a good reason we have two ears! It's funny, when we were in New York in October she was talking about getting her big ear pierced when she got home and I was so excited about it but she's chickened out since then. Believe it or not she thinks it will hurt too much. I think really, compared to having your jaw stretched 29mm you think an ear piercing will hurt too much. So I'm bummed. Keziah is 10 and still no earrings. At least Becky got hers done when she was 5. Fearless child.
Last but not least in Hannah news. When John and Hannah were at the Ronald McDonald house in New York one of the Dad's at the house that John is friends with asked John one day if we had ever made a wish for Hannah with Make a Wish. John said no, because she doesn't have an illness. The Dad told him that that doesn't matter and that we should contact them when they arrived home. So in December we applied on her behalf to the local chapter of Make a Wish and after a loooonnnngggg wait they got back in touch with us to tell us that Hannah was having a wish granted! Her wish is to go to Disney World in Florida. So on April 25th - May 2 we are all (yes all 6 of us) are flying to Disney World for a week. Yeah!!! She is so excited. She tells people "I've had a hard life and Make a Wish helps kids who have a hard life have a easier time." She's so funny. So we are taking poor Hannah and her hard life to Disney World. God Bless our beautiful amazing little girl. She is truly a blessing and a treasure to us.
If anyone has actually read this - Thanks for caring about us and joining us on our journey. Many blessings,
Judy

Sunday, January 4, 2009

 

Keziah seriously whooping Danny at foosball. He says its because she stole his crazy dance from him.
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Hannah and "Big Rich", as she call him, Rich to everyone else, who works at the house - another one of her favourite people in the world.
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Hannah and Danny, who works in the playroom at Ronald McDonald House on the weekends - he's one of her favourite people in the world.
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At Rockerfeller Center in front of the big tree.
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Keziah and Khalid and their amazing light up glasses - getting closer to midnight.
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Keziah at the New Years Eve party - hanging with her shadow Khalid. The sweetest three year old you've ever met. To learn about him and his condition check out his website at www.caringbridge.org/visit/khalidamos.
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Friday, January 2, 2009



We saw Dr Greig today. She confirmed that Hannah's facial nerve was injured during her surgery but the outcome will take up to several months to really know what is happening. We just have to pray that it starts working correctly.

After our appointment with Dr Greig, we all went up to Toys R Us. Keziah won a $20 gift card from her awesome Karoke performance on New Year's Eve and she had a blouse to return for a different size. From there we walked up to Rockerfeller Plaza to see the skating rink there. It was really cold out today. The air temp was around freezing but the wind was blowing and we really felt it. We walked on to Central Park to see the skating rink there. It was just getting dark when we got to the park but the rink had lights and it was really great. We watched the Zamboni clean the huge ice surface and waited until skaters got back onto the ice before we headed for home.

Back at the house, we had a easy dinner, pizza, mac and cheese and shrimp for Judy. The girls then went down to the play room and played with their friends. Keziah has being amazing. She has found so many kids to befriend and pour into. The response has being great.

Judy and I hung out tonight, did some laundry and started to get ready to go home. We hope to get back to Central Park on Saturday for at least a short play, then back to Vancouver on Saturday night.

TTFN
JJK and H

Thursday, January 1, 2009

Amazing what a good nights sleep will do. Hannah is feeling so much better today. She actually went and played in the playroom today and was not whiny and clingy all day. She is still really swollen and when she smiles it is only on her right side. We are going to see Dr. Grieg tomorrow, Dr. McCarthy’s ‘fellow’, and she is going to assess whether she thinks its from all the swelling and the trauma of the surgery or if there is the possibility that there was some nerve damage. She said, though that it can take up to several months for the swelling to completely come down and the nerves to return to normal. So we’ll find out more tomorrow.

Last night was the new years eve party at the house. Hannah really wasn’t up to being at it. She was pretty upset at that. She wanted to put on her pretty dress that she brought and go to the party but I knew that I was too much for her. She had blood all over her neck and wasn’t letting us wash it off, she was just exhausted and had spent the previous several hours lying on the pullout bed on top of of me watching movies. So we went downstairs in her pjs and she lasted for about a half an hour - it was during ‘Who let the Dogs Out’ that she finally needed to go back upstairs.

Keziah however was the party animal last night. As she said to Auntie Al today she ‘partied hard’ last night. She was singing karoake, dancing, blowing noise makers, and playing with the little kids. And she rang in the new year with Daddy for the first time.
I had been asleep for awhile when they came in the room and woke up when they came in - wow was it every load outside. It was like bombs going off out there. Vancouver is loud but this was unbelievable.

We headed to H&M today for Keziah to spend her money today and buy herself some clothes. Hannah of course needed to get somethings too - she can never be left out when clothing is involved. It was all going well until she saw herself in the mirror and got very emotional at the way she looks right now - that put an end to clothes shopping for her. Kez got some awesome clothes and cannot wait to go home and do a fashion show for Becky. It was a good day. Hopefully little Miss Hannah will be even better tomorrow and we can walk to Central Park tomorrow. Her friend Mattie from the house told her she needs to go see the ice skaters at the park. That’s the plan for now.