Wednesday, December 31, 2008

Happy New Year

Hi there
Hannah just wants everyone to know that she has had a quiet afternoon in bed watching movies, eating pudding, ice cream and having a nap. We've watched Wall E, Barbie's Princess and the Pauper and Sky High. We went downstairs for the party for a little while and watched karaoke and listened to Who let the dogs out (one of Hannah's favourite songs) and now we're back upstairs in bed together watching Sky High. Hannah is eating a bowl of vanilla ice cream after having her antibiotic. She also want to say that she loves all of her Aunts and Uncles - so pass on the message!
Lots of love Judy and Hannah

It’s been a long day and a half. Poor little Hannah is sound asleep in bed right now. She and John got back to the house just before 1pm. They spent the morning in Dr. Grayson’s office as Hannah was fitted with her new removable orthodontic appliance. This new device replaces her splints and her wedge that we had so many problems with over the past 8 weeks. It was amazing to watch how they build the new appliance. The used an acrylic powder mixed with some chemical solution that makes the acrylic malleable and they spread it like puddy on the base appliance. The acrylic hardens with time and warm water. Once the soft acrylic is shaped correctly and the fit between her teeth and the appliance is perfect the technician grinds the excess acrylic away and leaves a smooth surface perfect fitted to Hannah's lower teeth. As There is nothing on her lower teeth - she just wears this device on her her upper teeth. It’s quite amazing what Dr. Grayson and Dr. Pocock have planned out for the long term for her mouth. This device is a temporary appliance and a new one will be built by Dr Pocock when sometime in early 2009. The new device will have the same basic structure but will have many other features that allow it to act as the anchor for the next stage of treatment. The next step in this procedure will be to systematically pull each adult down to meet the lower teeth. It will take a long time for this procedure to be completed and will require Hannah to endure a significant amount of discomfort.

So yesterday did not go at all as we planned. Dr. McCarthy spoke to us for awhile before Hannah went in to surgery and he felt it was going to take an hour and half for the whole thing. So when the three hour mark came and went we began to wonder what was taking so long. Then when we went past the four and half hour mark, John went in search of someone at the nurses’ station to see if they could find something out for us. On the way there, he ran into Dr. McCarthy on his way to speak to us. He explained that he had a difficult time getting at the distraction device on the top end of the distracted bone. He had to make a second incision just below her hair line to be able to remove the device at the upper end. It turns out, she began to bleed quite heavily at that point and it took quite a while to get the bleeding under control. The scare tissue that formed from her last surgery was the culprit for the bleeding complications. Due to the length of time she was in surgery, the lateness of the day and the fact that she bled quite a lot during surgery the doctors decided to keep her in the hospital for the night.

I was taken to see Hannah while she was in recovery, about a half hour after the surgery was over. It was so different compared to going to recovery in BC Children’s hospital, where there are only little one’s in the recovery room. This time, she was the only child in there - the rest were adults. Lots of moaning and weird sounds coming from all the beds. Very unpleasant place to be. There she was, so tiny, in her big bed - she looked terrible. Lips were translucent and she was so puffy - whether from all the fluids they were putting into her or from the trauma of the surgery, who knows. She was asleep when I walked up to the bed but as soon as I said her name she woke up and wanted a hug and then through a very croaky voice asked me to ask her nurse for a popsicle. This is standard procedure at BC Children’s - as soon as they are awake they have a popsicle in their hands. No such luck in grown-up recovery. Ice chips and water. So she made do with water but came very close to having a cry about the no popsicle. I was in recovery with her for an hour before they moved her up the pediatric ward. Her doctors and nurses were amazingly nice and kind to her. One of Dr. McCarthy 5th year residents came to see us before Kez and I left the hospital - he found out that Hannah really wanted a popsicle so he said he would see what he could do about it. Ten minutes later he arrived back with two huge Lifesaver popsicles - more than likely he went and bought them for her. So nice and sweet of him.

Last night was a challenge for both Hannah and John, neither were prepared for an overnight at the hospital. They shared a room with a very young baby who spent most of the night crying. It must of have being so hard for the mother as she tried with little success to get the baby settled and comfortable. Hannah watched TV and videos throughout the night and napped between. John on the other hand, rested until about 3 am when Hannah finally feel asleep. By 4 am Hannah was so full from the constant IV that her bladder was on overload. She peed almost 5oo ml. She peed again at 5 and again at 6, but only 200 ml each time. (It is hard to imagine how uncomfortable she was with that much urine in her bladder) At some point in the midst of a pee break, John remembered when Hannah was in the hospital in September and the fact that she was not allowed to leave the hospital until she walked to the bathroom and went pee on her own. A light went on at that moment, Hannah must have remembered that she had to pee before she was allowed to go home but held it as long as she could.

John did manage a couple of hours of sleep and according to Hannah he snored rather loudly!

Yesterday was all very hard on Keziah. She told me over dinner that when she saw Hannah in her room that she almost started crying because didn’t expect her look like that. Poor old Kez. Such a tender heart.

Tonight is New Year’s Eve. We will not attempt to go to Time Square. It is cold and snowing and they expect to have about a million people there - Crazy! So we’ll stay home and join the House’s New Year’s eve celebration. They are having a dinner and a dance. Don’t think Hannah will be dancing tonight. We bought Wall E and Peter Pan
(the one with real people) and are going to eat ice cream, chip, chocolate pudding and watch movies.

Hope everyone is well - happy new year!
Judy

Tuesday, December 30, 2008

Waiting, waiting, waiting....

So here we sit in the waiting room at the hospital. Hannah has been in surgery since around 12:15 and its nearly 3pm. Keziah is being a super-trooper at the waiting game. It can try the patience of the best of us. Hannah was pretty nervous today about surgery. As much as she wants that pin out and to no longer have the area around it cleaned she really does not want to have surgery to get it done. I was explainging to her last night that the last time she had surgery she woke up to the distraction device and the splints on her teeth and this time she’s not having this happen. She’ll wake up with the splints out of her mouth, the pin no longer there and just a few stitches on her neck which will be covered up by a bandage. Yeah...she wasn’t buying it. So we’re waiting and I can’t give you an update on how she’s doing yet.
But I can tell you about our day yesterday. We had a good night’s sleep on Sunday night - got to bed around 10pm - which isn’t bad when you think that its 7pm in Vancouver. We all slept well and even all slept in until after 9am. We were very lazy and took our time getting ready to get going and were nearly late arriving at the hospital for Hannah’s 1:30 appointment with Dr. McCarthy. We briefly met with him and went over what he was going to do today and then we straightened out the details of where we were going to be going today (even with all that straightening we were still sent to the wrong place today). Afterwards we had a quick meeting with Dr. Grayson about Hannah’s wedge that fell completely out of her mouth on Christmas Eve. He explained that today he is removing her splints from her teeth and then, while she is under they will take molds of her teeth to send to the lab, they will clean her teeth and repair any damage to her teeth from decay while wearing the splints. Then she will go back and see him after she is out of recovery later today to get fitted for a retainer-like device that will be removable that will have a built up side on the left so her bite will meet.
Once we were done at the hospital we decided to head over to Fifth Avenue to grab a late lunch at TGI Friday’s and then walk up Fifth Avenue to H&M’s and then to FAO Schwarz. Well, the cab couldn’t get to Fifth Avenue due to the crowds so we got out and walked the last block - the crowd at TGI Fridays was crazy - thankfully its a big restaurant and we were seated 25 minutes later. By then bloodsugar had really plummeted and Hannah was just delightful to be with. After eating we started ‘walking’ up Fifth Ave. - I have never seen such a crowd of people as this. After the 4 blocks to H&M we made the very sad discovery that this H&M does not have a children’s section. Keziah was so upset. This was the one thing that she really wanted to do that day. So back out into the crazy crowd we went - each holding onto our assigned child’s hand for dear life. 6 blocks to FAO Schwarz and there was a line up to get in to the store. Initially both girls said they didn’t want to go in - but we decided to go in anyways as the line up was moving really quickly and we aren’t planning on going back there before heading home. What a zoo!! We were all so happy to get in our cab to get back to the house. We got ice cream and cones from the grocery store and after we had a snack at 8pm we watched 2 episodes of Reba and had our ice cream. And then....bed. What a day. We never quite got done what we really wanted to do. And finished the day exhausted and spent.
We’ll update once we know more about how her surgery has gone.
Hope you’re all well
Judy

Monday, December 29, 2008

Our first full day here



Evil, evil red eye. Amazing how crappy you feel when you remove a nights sleep from your life and then add some jet lag to the mix. We got to bed before 10pm last night - we were all really tired. Hannah was the only one with some gas in her tank still. Kez was just getting paler as the night wore on. It took along time to get Hannah's neck cleaned, her mouth done and medicine in her. Bedtime couldn't come quick enough for John and I. Keziah had a great sleep last night - nearly 12 hours. Hannah slept well too but she woke up after 8am to a pee in her pull-up which Daddy dealt with. Bed stripped, Hannah washed down, clean clothes, sheets in the wash and he tried to come back to bed but she discovered that she was 'starving' and wanted him to get up and feed her.
We made it to John and Hannah's New York church this morning - late but we made it there. It was too bad that the Tyson kids, Hayley and Nathan, Hannah's friends, were away for the week. After church we took the subway to Times Square and hit Toys R Us to ride the ferris wheel. We couldn't get tickets until 2:20pm so we had to hang out for over an hour. However, they do have a girls section with everything girlie where Kez got some cool dress up things and they both got blinged out microphones! We then went to the Barbie section which is in a Barbie house - wow. Keziah was really excited about that. Hannah bought herself a Barbie pool - she had a tough decision to make - pool or wedding Barbie. Tough decision. The pool won out.
The ferris wheel was awesome. Its quite something to see a full size ferris wheel inside of a store. We didn't get the Barbie car - but we were in the little tikes fire truck. We had a choice between the fire truck or a Scooby Doo car - they choose the fire truck. We probably went around 9 times - lots of fun.
After Toys R Us we went to Ellen’s Stardust Diner in Times Square. Such a fun restaurant. All the waiters and waitresses are singers and trying to make it on Broadway so constantly while eating there is someone singing. And this is not some sort of amateurish show - they are amazing singers. We were entertained with "I'm a Believer", "Mama Mia", "My Favourite Things", "Man in the Mirror", and "Seasons of Love". Lots of fun.
We're planning a quiet night at the house tonight - maybe we'll watch a movie. Tomorrow we're off to the hospital for a 1:30 appointment. We hope to get Hannah doing some things. Keziah really wants to get back to the American Museum of Natural History. And we have yet to get up the Empire State Building. Wish us luck!

Saturday, December 27, 2008

At the airport, we went through the deaths long line up at the check-in, then we went through the deaths long line up at Vancouver airport security. After we went through security we had to wait at the gate, Hannah was playing on the moving sidewalk. I did a super man on the moving handrail. On the plane we had wait for 2 hours on the airplane in Vancouver to be de-iced before we could takeoff. My favorite part on the flight was watching tv and doing crafts. Since arriving at the Ronald McDonald House was taking a shower and playing in the playroom.

By Keziah Davies

So we arrived safe and sound here in New York. It was a bit of a wait, as Keziah said, at the airport and it took alot out of Hannah waiting in the two long line ups to get checked in and then through security. Then she ran like crazy on the moving sidewalk for half an hour. So almost as soon as she was on the plane she was sound asleep. She briefly woke up during the flight but was back asleep again quickly. Keziah loves to fly. She gets all set up in her little space with her pillows and blanket, ipod, books, pencils, and art pad. As soon as the TV's were on she was watching Hannah Montana and drawing in her new art pad. At around 3am Vancouver time her TV suddenly quit working - divine intervention I think- as she was saying that she didn't want to go sleep before this. Now there was nothing to keep her occupied and when I suggested she get some sleep she was fast asleep two minutes later and slept for the next 3 and half or four hours. However, that was her sleep for the night! I snoozed a bit but never was really asleep and John was awake all night. Needless to say we feel less than marvelous today. We had a nap this afternoon for a couple of hours but are really looking forward to going to bed tonight.
Hannah is right at home again. She announced on the way here in the limo that she wanted to stay for two months again. I think she will be very sad at the end of the week. Especially there is no plan of coming back to New York in the future. Poor Hannah - this is her second home now. She is so social and the house meets all of her needs so beautifully. So many places she goes she doesn’t get noticed due to her facial difference but here at the house they have made her so special and to her this house is here just for her.
We're off for dinner now.

Friday, December 26, 2008

Getting ready to go

Well, its snowing again. We've had a shocking amount of snow in Vancouver over the past 10 days and it is snowing once again. Which would be find if we weren't off to the airport tonight at 7pm to catch our flight to New York. Or flight is at 9:25 so we are really hopeful that it is going to have either stopped snowing by then or the warmer weather that is in the forecast may be here by this evening. That is our hope at least. We've been watching the news all week as they've reported on all the headaches and heartaches at the airport this week as people have tried to get places for Christmas - all the while knowing that we were getting on a plane on Boxing Day.
So Hannah got up this morning at 7 am and came down the hall, bleary eyed, hair askew and barely awake - but doing a conga line dance. I think its fair to say she is really excited about going to New York tonight! The excitement does not lie in surgery on Tuesday, getting her pin removed, the end of having the awful thing cleaned twice a day, etc - no - the excitement lies in that we are going to go stay for a week at the Ronald McDonald House again. As she and John were saying goodnight last night she said to him - "are you really excited Daddy". She has missed the house so much since she has come home. And this time she gets to have Keziah and I there too for the whole week too. We can't wait. As long as we get on our plane tonight - its all good.

Wednesday, November 12, 2008

An uplifting reflection

John emailed this to me today. I'm not sure where he got it from but wow does it ever speak to me right now. We're living a lot of stuff right now with our oldest child Zach who is 16 and really struggling with life right now. So I just thought maybe someone might read our blog and need to be uplifted as well. Here you go.

Charles Spurgeon reading

"The trial of your faith."—1 Peter 1:7.

FAITH untried may be true faith, but it is sure to be little faith, and it is likely to remain dwarfish so long as it is without trials. Faith never prospers so well as when all things are against her: tempests are her trainers, and lightnings are her illuminators. When a calm reigns on the sea, spread the sails as you will, the ship moves not to its harbour; for on a slumbering ocean the keel sleeps too. Let the winds rush howling forth, and let the waters lift up themselves, then, though the vessel may rock, and her deck may be washed with waves, and her mast may creak under the pressure of the full and swelling sail, it is then that she makes headway towards her desired haven. No flowers wear so lovely a blue as those which grow at the foot of the frozen glacier; no stars gleam so brightly as those which glisten in the polar sky; no water tastes so sweet as that which springs amid the desert sand; and no faith is so precious as that which lives and triumphs in adversity. Tried faith brings experience. You could not have believed your own weakness had you not been compelled to pass through the rivers; and you would never have known God's strength had you not been supported amid the water-floods. Faith increases in solidity, assurance, and intensity, the more it is exercised with tribulation. Faith is precious, and its trial is precious too.

Let not this, however, discourage those who are young in faith. You will have trials enough without seeking them: the full portion will be measured out to you in due season. Meanwhile, if you cannot yet claim the result of long experience, thank God for what grace you have; praise Him for that degree of holy confidence whereunto you have attained: walk according to that rule, and you shall yet have more and more of the blessing of God, till your faith shall remove mountains and conquer impossibilities

Friday, November 7, 2008

Friday Night

We have come to the end of our first full week at home. We have found a routine so there is a little predictability now for everyone. Hannah has made three trips to the orthodontis since we got home. Her "wedge" has broken twice but we found a very nice ortho who has been able to make a modification that seems to have solved the design limitations of the customization that was done to the wedge in NYC. It seems that you start with the ideal and then grind away until it fits. The challenge is then managing the mechanical limitations that arise from the initial design. We hope that the wedge will last until the end of December when it will be replaced with a different appliance post distractor removal. We continue to clean the site where the pin for the appliace comes out of her skin. It is an amazing process the body goes through when there is a foreign body implanted. It oozes "gunk" that turns into a scab like substance when it to the skin. We have to remove most of the stuff and keep the pin site open so that no infection can take root. So far everything is staying clean and we are infection free. Of course Hannah hates the cleaning. I honestly think it hurts to have this stuff removed, but what can I do? It has to be continously attended to and she is having to put on a brave face. Which of course she does to the nines. Hannah is so resilient.

We heard today that the provincial government is negotiating with the hospital so there don't appear to be any barriers to us returning to NYC in Dec. Yeah, we will have New Years in the Big Apple.

Hannah is pressed at school these days as she is behind and having to work hard to catch up. She is thrilled to be back and hanging out with her Vancouver friends. She got to go to our churches "pastorate" last night. Pastorate is a home group where 20 or so people get together, share a meal, praise God and for us move through a study of a book called "Renovation of the Heart" by Dallas Willard and Randy Frazee. While the grown ups talk Hannah and the other kids play and have a great time together. Unfortunately, I have not being able to attend since I got home as work has consumed a lot of my time while I get back into the swing of things. Hannah loves school and pastorate but by Friday night she is totally fagged. OMG is she tired. Oh well, she can sleep in tomorrow as we have a free day.

We are now solidly into the rainy season in Vancouver. The sky is overcast most days and we are having rain almost daily right now. Tonight the forcast calls for 40 mm of rain. That is almost 2 inches for those who measure life in miles, gallons and feet. We should have this kind of weather for weeks/months to come. The cost of living on the West Coast of Canada. Let's hope we'll see more the the sun and have fewer weather changes so Judy has fewer headaches.

I hope you're well and thanks for visiting.

John

Saturday, November 1, 2008

Fall is Such a Great Season

We have been home for 4 days and life looks like it's getting back to a regular routine. Wednesday and Thursday were a total blur for both Hannah and I. Hannah stayed home from school and I went to work on Wednesday. We both managed the day okay, tired but on an even keel. Thursday came with the edge of jet lag cutting deep. On top of both of us feeling terribly, Hannah's "wedge" (the piece of acrylic that fills in the gap between her teeth on the left side) broke. One of the anchors that hold the wedge in place snapped off at school and left Hannah with her wedge hanging in her mouth attached to one side only. Hannah's orthodontist is currently on vacation so we had to find another orthodontist with an on site lab who would be willing to take the wedge out and try and fix it. I talked to 3 different offices and finally ended up locating one really close to home. So I picked Hannah up and we went and got the wedge fixed, albeit a short term fix, until our Dr Pocock is back from vacation and he can make the necessary alterations to ensure this problem does not happen again.

Hannah said to me just before we got on the plane Tuesday afternoon, that she didn't want to leave New York. She and I both came to really love living there. The city is a great place and living at Ronald McDonald House was the best. The place was great but the people were what made it home. We are both community minded people so it is no wonder why it was so hard to leave. Hannah has had a hard time adjusting to coming back to the family and not being the total centre of attention. There have being a few situations where she has lost her mind because life would not give her exactly what she wanted and in the way she decided it needed to be delivered. This is more than the ego centric 6 year old personality. It will take her a while to adjust to life with two parents and three siblings.

Work was full on the moment I walked through the door. I certainly arrived back with a fresh perspective on my work and those people who I work with. With Hannah's surgery now behind us and our next trip to NYC in December only a week long, I can now really focus and prepare to lead my team into a major change that is expected in the early spring of next year. It should make for an exciting winter.

I have spent time reading on other blogs the progress of our friends, but to be honest I really miss them. I met some of the world's best kids and parents at the house in NYC and hope and pray for each of them that God would bring healing to each child. I pray that as the healing comes, God would grant peace and patience to everyone.

We will have our first Sunday back to our church and will have lots to share with our friends and family there about our time in New York. We saw Judy's brother and sister in law today and will see my mom after church tomorrow. So we are almost reconnected to our network in Vancouver. Next, we have to reconnect to our peeps (friends) in Victoria.

TTFN
Hannah and John

Wednesday, October 29, 2008

Homecomings

They're home!! Yeah!! It was so good to see their tired but happy faces come through the doors last night at the airport. Daddy was loaded down with all the bags and Miss Hannah was strolling along. I swear she's grown taller in the two weeks since I last saw her. Daddy's hair has definitely grown bigger. One things for sure, besides her losing a lot of weight (scary on a already skinny little 6 year old), she sure looks different. John's been great about sending me pictures along the way so there was no great shock about the change. The change actually is quite subtle in many ways. But as a mother here's how you notice some of the changes when your child goes through facial reconstruction - the way her skin looks has changed, just the way its pulling across her face is different. The slight angles of chin, her jaw, her little ear, all have shifted and changed. And the big one for me last night was, as she laid on the couch last night with her head in my lap as John cleaned the area around her distraction device, how different her face feels as I ran my hand over her face. There are changes that can't be seen but can be felt when you know someone's face "like the back of your hand". I wasn't prepared for this difference or the effect in my heart when I was feeling these changes. I was so surprised that I could feel them. That I just knew that the terrain of the my child's forehead was now completely changed. And I didn't know that my hands would find and feel this change. Once again a surprising side of motherhood that I wasn't expecting. It never ceases to amazes me.

Tuesday, October 28, 2008

X-ray pictures and our beautiful princess



It's today - hurray! hurray! hurray! We're just a little excited. So here is the link to some amazing photos of Hannah's last set of X-rays. Amazing to see the bone growth. If you go into the album Last Import and scroll down you will see photos of Hannah's X-rays from before her distraction device was activated and at 10 days. The distance that the distraction device distracted (sounds like a tongue twister) is 29.5mm. It's quite amazing to think that three weeks ago that bone was not there and through the work of John and Hannah it is now there. Isn't the human body an amazing thing? The miracle of creation.
Have a blessed day!

http://picasaweb.google.com/John.Davies001/HannahSXraysAtTheEndOfDistraction#

On the Way Home

We woke up today with an overcast sky and rain falling. The temperature was a cool 45 degrees f that is about 7 degrees C. Quite a contrast to the day we arrived when it was overcast and raining. Torrential rain from hurricane Hannah. The temperature that night was a balmy 90 degrees F, thats 32 C, the humidity made it feel like a sauna at 120.

We had our breakfast at "our diner" the Three Star DIner. Hannah ordered her standard silver dollar pancakes with chocolate chips and an apple juice. This was the same diner we ate at our first morning here. When we got to the restaurant Hannah asked if we could sit at the same table that we sat at our first morning. Hannah got the significancy.

Unfortunately, Hannah was not able to manage the bulk of the pancakes as she is really having a hard time with the new bite plate she has in her mouth. We tried some Rice Krispies when we got home and she seemed to be able to eat those alright. She reported fair success in getting them in and down. I'll take every calorie I can get right now. Flying today may be a culinary crisis as we have to leave the house at 2:30 pm for our 5:40 pm flight. I have some nutella sandwiches and grilled cheese in mind and some cereal ready to go and I will make a mac and cheese that she can eat cold on the flight. That is if she eats. Prayer is really needed in this area. I thought the food issues would go away once she recovered from surgery but the placement of her wedge yesterday seems to be a bigger dilemma than I anticipated.

What wedge you ask? Hannah spent 3 hours in the dentist chair yesterday having an acrylic wedge secured onto the bonded upper plate in her mouth. The gap between her upper and lower teeth on the left side was 6 mm. A great result according to the Drs. They then molded a piece of acrylic to fit tightly between the two bite surfaces so she could use that side of her mouth to chew on. In 8 weeks the bone will have consolidated and then the next step is to start pulling the teeth down into contact with the bottom teeth and complete her bite. It is amazing how the bone fills in as the teeth are coming down. It will take Hannah a few weeks to learn how to manage talking, saliva, and food with this new bulky thing in her mouth.

Hannah was the perfect patient while having her mouth pulled this way and that way. Not a complaint from her. She was amaziing! At one point in the process we had a few minutes while Sabina (the technician) was doing some work on the wedge, so we skyed home. It was 7:30 and everyone was getting ready for school so they were all in the kitchen when we video called (skype is a video conference facility available on the internet for free if you have a camera on your computer) It was really cool for them to see Hannah in the chair. The staff in Dr Grayson's office found the entire process facinating. Sabina couldn't believe they were in Vancouver and Hannah was in her chair.

Our last duties here at the house will be to wash the sheets and do a final clean of the bathroom. The washer and dryer are in use right now so time will tell if we are able to get our chores done in time. I have seen this senario play out on other occaission so I will see if I can access another washer on a different floor if these ones don't come available in the next hour of so.

As we ready to leave I am having lots of thoughts about the people we have met here. How do you say goodbye? We will follow the stories of the kids who have web sites or blogs, but goodbye is a very different experience here. As I have said in other posts, it will take me a while to figure this out. I would be interested in your thoughts on "goodbye" so either post a comment or send me an email at john.davies001@gmail.com and let me know what you think.

I have journeyed with these families for 2 months now and I have created bonds with some of them that I will hold for years to come. I hand each of these children and their families over to Jesus now as I leave.


Stay tuned for our re-entry updates over the weeks to come.

TTFN
Hannah and John

Sunday, October 26, 2008

2 Sleeps

It's Sunday and we have two more sleeps until we head for home. Yeah!!! Til then Hannah is laying low as she is running a fever. There has being a virus working its way through the house and several of the kids have already had it, now its Hannah's turn. Needless to say she is feeling so crappy. We spent a rainy Saturday at the house with little to get excited about. Hannah was up and down as her body temperature spiked and ebbed. She played a bit and watched a video and had a fairly good day. Today may prove to be a bit more of a challenge. The playroom downstairs is closed for the day as they prepare it for a Western dance on Monday night. There will be a barn load of activities and lots of hay and square dancing for people of all ages. It sounds like it will be a great last night for Hannah and I at the house.

Monday is Hannah's last set of doctor's appointments for this trip. She will have a bite plate built to fill in the gap that has grown between her teeth on the left side of her jaw. As her jaw bone has grown the teeth have had a gap emerge. Once the distraction device is removed in December, Hannah will undergo a series of orthodontic interventions that will pull her upper bite plate down so that she will have full contact of her teeth. This will be done in Vancouver by Dr Pocock and will take many months to accomplish. Between now and then, she will have an acrylic wedge bounded into place so she can chew. I have noticed that Hannah can not really chew anything that has substance. The only place she can chew is on the far right side of her mouth. This combined with the two sets of elastics that cross her mouth from top to bottom, left to right are making eating an ever increasing stress for Hannah. It will be great to have the wedge in. Lets hope she doesn't have to wear cross mouth elastics beyond tomorrow.

Judy and the kids at home are waiting with great anticipation for our arrival. We will need lots of prayer as we head home. Being away for two months will create a huge transition for everyone as we come back together. Having a two parent family again will mean adjustments for Zach, Rebekah and Keziah. Each will manage it differently, but I expect that it will be hardest for Zach. For Hannah the transition will mean not having me at her beck and call 24/7. She will have to share me with the other 3 kids and with Judy and with my work. Jet lag will be a snap compared to this transition.

Hannah will also be transitioning back into her school community. She has made so many new friends here at Ronald McDonald house. Her current set of friends, Cody, Maddie, Griffin and Kyle will all continue to either live here at the house or be back and forth as their treatment regime requires as Hannah heads home to old but familiar life. Her treatment will continue in Vancouver and with the exception of her December surgery, I do not anticipate our return to the house. We have learned much about future surgeries for Hannah while we are hear and it will be a real challenge to convince the provincial government to pay for future surgeries to happen here in New York. Would this be the best place for surgery? No doubt, but the cost and time away are prohibitive and well beyond our capacity as it appears now. We will continue to pray and seek God's direction on how we are to walk the next set of surgeries out. He has provided richly for this intervention, so if this is where future surgery happens, I believe he will provide all that we need. Stay tuned to see how God works it out.

TTFN Hannah and John

Friday, October 24, 2008

Delays in New York

If you are a home body and have had to be away from home for almost 2 months you anticipate your departure for home with increasing anticipation. When is your delayed return home a good thing? When the doctor says that the results are looking excellent and that he would like to keep activating Hannah's device to the very end of the range of the device. On Thursday, Dr McCarthy had a good look at Hannah and the results of the activation of her device. He was very pleased to see the evidence of the bone lengthening by the increased gap between her upper and lower teeth. The larger the gap the better the results. The post that the device uses to spread the bone growth over is 30 mm long, so Dr McCarthy wants to activate the device right to the end. On a normal day, I activate the device twice but I am adding an extra turn today and again on Sunday to get to the end of the range of the post. This will mean that Hannah will have 29.5 mm of new bone once the bone has consolidated over the next 8 weeks. So we have changed our return date to Tuesday night and we are here for 4 more sleeps. Hannah took the change quite well, me, well it was really hard to change gears so close to our departure.

At our appointment on Thursday we also confirmed that Hannah will need to return to NYC for the device to be removed on December 30th. Initially we were scheduled to have the device removed on Dec 23 but the thought of being away for Christmas Day was not cool so we asked to have the procedure delayed a week. Thankfully, everyone agreed and we got the 30th date. So we will be spending New Years in New York City. No we will be going to Time Square to see the ball drop, unless we have a police escort and a private box. A 100 000 people or more in Time Square seems outrageous knowing how small the space actually is, but people flock there in droves. We can watch it on TV like the rest of North America.

We have being re-referred to Ronald McDonald House and hope to be able to stay at the house for the week that we expect to be here. This is a good thing as we are not able to take advantage of the Hope Air program in December. Hope Air paid for our flight to and from NYC this trip but they are not able to book during the peak holiday season. So we are going to have to fly via commercial carrier at high season rates. Ouch!

Our plan is to fly Keziah, Judy, Hannah and I and that will run about $2400 on Cathay Pacific. While this is by far the best price out there for those dates, it also means we fly the red eye. A hard trade off, but we will manage.

Life for Hannah and I was very busy with family and then Auntie Kath here. Starting Sunday night last, Hannah started waking up several times during the night. It would appear that the latest Indiana Jones movie was a bad choice in movies for Daddy and Hannah to watch. While Hannah managed the show well, her dream scape seems to have being scrambled rather seriously. We had 4 nights of fitful sleeps which impacted both our day time energy. Hannah and I have prayed through the images and impact of the movie as well as prayers of separation and burden bearing for our friends at the house. It would seem that at the same time Hannah was processing Indiana she was also processing the illnesses of several of the kids at the house. We have got to know a family who have 3 kids with a condition called Sickle Cell Anemia. This is red blood cell disease and can shorten life expectancy considerably if not treated. The boys are all going through treatment which includes a bone marrow transplant for a brother who is not a carrier of the disease. Hannah wanted me to tell her about the disease at 10 pm one night. I didn't actually know what the condition was so I told her that I would research it on the internet. At midnight that night she woke up right out of sorts. When I got her calmed down she asked me if I had found out about Sickle Cell. So we continue to pray and have now had two good night sleeps. Yeah.

With one weekend added to our time in New York, I hope that Hannah and I can spend some more time with our friends and maybe get out and do some last minute sight seeing. Or maybe not, it all depends on Hannah's vision of how we should spend our time. I can guess we will have at least one more trip to FAO Schwarz and Central Park.

Hannah has joined a group called House Heroes at http://dylanhartung.net/RMDH.html. Dylan and his family have called Ronald McDonald House for home 4 years as Dylan has bravely fought a battle against cancer. They created this part of their web site so that families can stay in touch after they leave the house. It is a really touching place for me to go. Not all of Hannah's friends are on the site, but some are and we look forward to visiting the site regularly over time.

So we have to unpack a bit to get more clothes out for our extra few days.

Blessings to you.

Hannah and John

Wednesday, October 22, 2008

The video link



So you may have noticed that the link for the video of John and Hannah's presentation on Monday night did not make it to the blog. So he put it on YouTube and here's the link to that: http://www.youtube.com/user/JohnDavies001. We getting pretty excited that we only have three more sleeps until they come home. I am about to have the back steps of our house ripped out today so I am madly trying to get the laundry finished so I don't have to be running around the front of the house, around the side and then in the back door to get it finished. What a pain! Auntie Kath returns home this morning and I pick her up from the airport at 10:40.
Have a great day!

Monday, October 20, 2008

Monday Night Football

Hi reader, I glad to see you've chosen this entry to read. Hannah, Auntie Kath and I have just arrived home from a fundraiser hosted by Ronald McDonald House and the New York Giants Football club. We rubbed elbows with the likes of Eli Manning and about 15 other Giants. The team was great, they signed autographs for those who came out and then shared a meal with everyone before they headed home. The House uses events like tonight to raise the profile of the house and to raise funds to continue to operate the house and all its programs. There were more than 500 people who came out tonight, each paying a minimum of $800 and a maximum of $10 000 just to come and see the team and meet some of the families from the house.

Hannah and I were asked to speak to those who gathered and share with them the impact of the house on our lives. We were honoured to share our story and help the house to communicate about the ongoing need for the house to continue to operate. So here is a copy of the video that we shot of the speech.

The gig was held at a wonderful place called the Chelsea Piers and it proved to be a fantastic venue. There were ten families who attended the event on behalf of those who call the house their home. Hannah played with her friends while the grown ups sat and talked and shared a glass of wine. The food was very nice, although Hannah wasn't interested in any of it as it was not mac and cheese.


The other event today was our last conference with the entire Craniofacial Team at NYU. Dr McCarthy is pleased with the growth of Hannah's ramus bone and feels that if we continue to activate her device until Friday then we will have reached our goal. This means that on Friday Hannah will have a new orthodontic device manufactured and fitted and we will be able to come home as planned on Saturday. Oh yeah!

So the rest of this week will be school for Hannah, a little shopping and getting ready to come home. It has been such an incredible experience to make New York City our home for these past 6 weeks. I have really fallen in love with life in Manhattan, but I am done with it now and will wait impatiently until Saturday when we can return home. I miss my wife and long to be in her arms again in our home. I look forward to the routine of fall with Zach, Rebekah and Keziah. I anticipate answering the 100's of questions from those who I meet who will ask, "how was it?"

I am not sure how people will respond when they learn we really didn't live New York as you may have expected. We didn't see all the famous museums and galleries, although I will come back many times in the future to explore each of them, we didn't get to the famous Zoos, we didn't even go up the Empire State Building. What I will tell them about is "the house". How I met so many brave kids who are living with cancer. I will share with them how Hannah impacted their lives and brought such joy to a place that can so easily be a place of somber hope. I will tell people about the Yankee's game, Mary Poppins, Mama Mia and the Rangers. But my fondest stories will be about hanging out in Central Park. Hannah and I clocked a lot of miles walking in the park and playing there. I love watching Hannah and the other kids who gather in the park as they race around and play make believe games of who knows what.

I'm going to miss my friends the most. I am going to miss Sammy and his mom Kor, Griffin and his mom Lesley and his dad Lou. I will miss Maddie and her mom Sara and dad Duane. I will miss Javier and his mom and all the spanish speaking families who I never got to know but got to know at the same time. For Braydon and his mom and most of all Katherine and her mom. These people and their stories will be what I remember most about New York City.

Now it is time to get ready for the next chapter of our family life together.

TTFN

Hannah and John

Sunday, October 19, 2008

Pictures, pictures and then....more pictures

OK, so the handy thing about digital cameras is that you can take lots of pictures and not worry about the expense of developing them. Also, when you have kids who love to take pictures you can give them a camera and let them go to town. Downside, you have a lot of pictures in the end. So...prepare yourself, there are a lot of pictures there from the Davies trip to NY. But in the album below, Last Import, if you scroll down past Zach's picture of Juilliard and the night sky experiment, you will find pictures of Hannah and Auntie Kath on the day Hannah picked out her new barbie at FAO Schwarz and also pictures of Hannah's xray's - before the start of turning the key and after 10mm of bone growth. So its quite cool. The album finishes with the pictures of Hannah and Griffin vs the Dads. While in the Picasa site check into John's Gallery where there are several other albums of our New York trip to check out - if you so dare!

http://picasaweb.google.com/John.Davies001/LastImport#

Have a great day
Judy

Friday, October 17, 2008

The Going and the Coming

Wow, so much to say and tell about the time that we had as a family. If you read Judy's entry right before this one you'll pick up on much of what life was like with 6 bodies in a small hotellike room. You will also understand the challenges of meeting the needs of children with a 10 year age gap. Impossible! I don't know how other larger families manage to meet their children's needs when there is a large age gap. You really have to be creative in making everything fun and for those who are are bored, oh well, they just have to learn how to make other choices.

It was so great for our family to be here in New York together. We most certainly had an impact on the house. For the three days after everyone left I had kids of all ages asking about where my other kids were. I've had three kids really make a big deal about Keziah not being here. They totally fell in love with her and in five days found a connection to her that is now broken. It was so wonderful to hear them asking where she is and to see their faces when they heard she has gone home.

With the NYC interlopers suffering from the "red eye" reality, Hannah and I had to seriously change our daily living. We didn't have the freedom to do whatever we wanted. Well, we didn't have the freedom to so whatever Hannah wanted. She managed the change well, but as Judy pointed out, there was lots of whining. Our life has not returned to normal since everyone has gone as Judy's sister Kathleen arrived the day after the family left. So we had just enough time to do laundry, vacuum, clean the bathroom and take in an art class before Auntie Kath (AK) arrived. Since AK arrived we have made it out each day for some shopping and long walks. Hannah has struggled being away from the house and complained, at times bitterly, about going places but in the end she has enjoyed the time out.

We have shopped at FAO Schwarz (corrected spelling) for a magnificent Barbie. Hannah designed her and selected her wardrobe with great care and attention. We have snaps to post some time when I can get a strong enough internet connection to upload the 100's of new ones. We also got to the Toy R Us in Time Square today, Friday. Hannah bought some new clothes for her Barbie and we got a few other gifts in anticipation of Christmas. When we left Toys R Us, we walked up to Central Park, stopping for a late lunch at TIF (a chain restaurant). While we walked through the park we found Balto, the dog who saved Nome Alaska in 1926, and played on the rocks, a Hannah favorite. We then ran into some friends, Lou, Lesley, their son Griffin, and Lesley's dad and his wife. Lou and I ended up playing football against Griffin and Hannah and we lost 35 to 0. A terrible defeat for the old men, but a sweet victory for the kids and spectators. AK got some good shots of the game and we expect to see the highlight reel on tonight's TSN sports plays of the week.

We had a sad moment today, Hannah lost some of her new Barbie clothes. While we were walking home from the football game, she dropped her clothes bag from the stroller and no one notice. We back tracked to see if we could find them but to no avail. She was great, no tears, no fuss. She was great. Let's hope she is feeling the same way tomorrow.

Dr Grayson and McCarthy both saw Hannah Friday morning. They looked at the xrays from earlier in the week and decided that there is still more growth needed, so we keep activating the distraction device unit they say enough. The device itself has 10 mm of distance it can travel so the maximum growth we can expect is another 10mm or 1 cm. Given we move the device 1mm per day that means we could be here of up to 10 more days of activation and then two days to create the new splints that will be in her mouth while the bone hardens over the next 6 weeks. Dr McCarthy, didn't seem to have any concern about our planned departure on Oct 25, however, we have not had the same vote of confidence from Dr Grayson, he has not weighed in on the time frame for a week, so when we meet with them on Monday, we will know more. The overall opinion from both doctors as that things are progressing as expected and that the changes are as anticipated.

We look forward to our last weekend in NYC and out last Sunday at Trinity Grace. They have been such a great support for Hannah and I while we have being here. We pray for their mission and their impact on the lives of the people of Manhattan for God's glory.

Today's prayer request is that Hannah will find a new pace of life that includes a willingness to see some of the amazing things that New York has to offer.

TTFN

Hannah and John

Been to New York and back again....




How does time fly by so quickly. Wow... I actually started to write a blog entry while I ate breakfast on Tuesday morning but never had a chance to finish it and so it sits on John's computer in New York. I thought it was about time that I wrote something about our time away. I wrote a great entry on Monday but for some reason the internet connection at the house wasn't letting me connect to blogspot so I couldn't upload my entry - it was good too. But you'll have to take my word for it. What I wrote about was how interesting it is to discover Hannah's list of things to do. If you suggest things to do outside of her list you are met with whining and complaining and possible tears. Her list is: play at Ronald McDonald House (all day is preferred), go to Central Park to play at the playground, go to H&M to buy her clothes (only her clothes), go out for food that she enjoys eating, go to Rainbow(cool store just up the road). That is her list for the whole of NY City. "Hannah do you want to go on a bus tour?" "Hannah do you want to go the the Musuem?" All met with whining. Such a funny kid. The other challenge we faced was getting Zach into bed at a humanly decent hour and awake at a decent hour. Needless to say we had a few great battles that we fought (and usually lost) while away. Our start time out of the house was usually not before 11:30am. My favourite was Monday morning when, after a monumental effort on John's behalf getting Zach up and awake, while we were now rushing to get to the hospital for Hannah's 12pm doctor's appointment he announced, in a shocked voice, but "I haven't had breakfast yet". You just have to love him.
Our highlights of the trip, I think, were watching Keziah and Hannah play at the house (the kids at the house fell in love with Kez - no surprise there), having Becky in NY and her amazing easygoing way of accepting whatever was going on and never once complaining or fussing, John and Zach's two NY Ranger's games and the amazaing seats they had at both of the games, John and Becks and Kez going to see Mama Mia, Zach, Becks and I going to see Spamalot (hey- Clay Aiken!), and our afternoon that we spent at Central Park - so much fun with them all there. Six people in one small room - always very interesting. Kez and Zach together for six days - nearly dangerous. But so good to spend all that time with John and Hannah and feel like a family again.
Hannah is doing so well and looks amazing. You can't really tell when just looking at her the difference in her face but on the Monday we were there we went for a clinic meeting with all of her doctors at the hospital. Dr. McCarthy had Hannah stand in front of a picture of herself taken a few days before her surgery and all her hair is pulled back so you can really see her face and he had John and I come behind him so we could really see her and it was then, looking at this older picture of her, and looking at her now that I saw the difference. Her chin has started to shift position - very subtle but its there.She's so funny though, she stands very patiently with this group of doctors staring at her and then as soon as Dr. McCarthy tells her he's done she's on Zach's lap back to playing Zelda on her gameboy. The whole time with this look on her face like "Can you guys hurry it up a bit".
So the great news is that they told us that day that John and Hannah will be returning on the 25th so....YEAH!!!! The night before we left I told Hannah that the next Sunday would be the last one at Trinity Grace Church, where she and John and have been going. She looked at me with this questioning look - "What do you mean the last Sunday?". So we went and looked at the calendar and I showed her that the Sunday after that she would be home in Vancouver. Total disbelief. So, although it was sad to say goodbye it was knowing that the next day my sister was arriving for a week in NY with them and that they would be home in 11 sleeps. Eight today!! Yeah!!!!

Saturday, October 11, 2008

What Does Red Eye Really Mean?



Red eye is the body's way of telling you that flying across a continent through the night is a really bad idea. Judy, Zach, Becks and Keziah arrived safe and sound in NYC on Thursday morning, 6:20 am NYC time and 3:20 am Vancouver time. Fortunately for them, Hannah and I were at an early appointment with Dr McCarthy and Dr Grayson.

Dr Grayson has increased the orthodontic intervention for Hannah. To keep the lengthening bone growing in the right direction they have to apply force on the upper jaw to keep the bone growing vertically. Without the added pressure the growing bone will be forced by muscle tissue to grow in a horizontal orientation. So they use an elastic that goes from an upper right side of Hannah's mouth to the lower left side on the mouth. This force pulls the structure of Hannah's jaw and keeps the bone growing vertically. So how does the elastic get attached. I do it. I spent an hour with the dental technician learning how to rope the elastic around a "button" on the top and then string it across Hannah's jaw to the bottom. The button is like a hook that is attached to the acrylic plates that are bonded to Hannah's upper and lower teeth. Needless to say this is a process that Hannah doesn't like, and neither do I for that matter, but we are doing it. The part that really sucks is that the elastics break regularly and I have to put new ones on. We did this three times yesterday, who knows how many times we'll have to do it today. Hannah hasn't complained about any discomfort so that is a blessing.

When Hannah and I got home from her appointment at about 11, everyone was fast asleep. It was so hard for Hannah to have to wait until the troops woke up. By noon, everyone was awake, except Zach, and they had guided tours of the house. Needless to say, everyone was overwhelmed with the house and how it is set up. The Star Wars video game and fooseball table we are real attraction. When Zach got up, he found the X Box 360 and spent the rest of the day telling Judy and I that we had to go and rent Halo (a game for X box).

By 3 we were finally ready to venture out and see some of the sites. Our first challenge was getting a taxi. Cabs are licensed to carry 4 riders, not 6. So we took 2 taxis to Central park with the intent of taking a city bus tour. Once we actually got to the park we opted for a little shopping at FAO Schwartz. We picked up a few treasures there and came home for dinner. The store was a blur for the big kids, mostly due to the lingering affects of the "red eye". Becks actually had blood shot eyes so the term "red eye" is actually accurate. We managed a mini van taxi that would take all 6 of us home, with Hannah sitting on a lap.

On Wednesday, the house received two tickets for the Rangers game against the Black Hawks, so Zach and I prepared to take the subway down to Madison Square Gardens. About an hour before we left the person who gave us the tickets called up to our room and asked if we would like to trade our tickets for some special seats that he had just got. Oh yeah baby. So we left for the game late and took the wrong train. We got the arena about half way through the first period. We asked an usher where our seats were and she didn't know. We were directed to an usher who had a large map of all the seats in the Gardens. He showed us where our seats were. He asked us to look at the time keeper and the two seats right beside him. Those were our seats. Right at centre ice with our knees pushed up against the boards. There are no better seats in the house to experience the intensity of a professional hockey game. Zach and I loved it. Zach took so many pictures of players at eye level. Wow. We even felt the action. During one play a New York player hit a Black Hawk player into the boards right in front of us. The boards groaned, the glass rattled and the sweat from the players made it through the seam of the glass and onto Zach and I. Zach thought it was just a little ice, I made sure he got that it was bodily fluid. We were both so grossed out. One of the other highlights for us was the chance to see Markus Naslund play for his new team (New York). He wears #91. He plays on the top line and had a so so game. Although his play was definitely so so it was made perfect by the fact that we could see that he needed a shave. The Rangers won the game 4-2.

We made it home safe and sound and had a decent rest.

More to come on the family visit.

Hannah and John

Thursday, October 9, 2008

One Sleep to go

It's Thursday and Hannah and I are having a tough time staying focussed and on track knowing that tomorrow everyone arrives in New York. Wouldn't you know it, Hannah has an appointment with both Doctors at 8:30 am so we won't actually see everyone until we get home around 10:30. Hopefully, the troops will have got to the house safe and sound and will have had a couple more hours of sleep before Hannah and I explode into the room. Poor Zach, he'll have the hardest time with this. His sleep patterns are so twisted without staying up all night and flying across three time zones. Maybe he'll fair best of all as the time change for him may just put him back into a reasonable bedtime/wake up time. Or maybe I'm just naive.

One of the parents here at the house let me know that there is a limo service that will pick families up at the airport and bring them here to the house for free if they have a car available. I called and they are able to make the trip so Judy won't have to figure out how she and the kids are going to get from JFK to Ronald McDonald House when it is 4 am her time.

Hannah has had two days without any doctor's appointments. I think it has done her a world of good to just stay at home, do her one hour of school work and play. Hannah's teacher is a lovely lady named Deb. She teaches middle school here in Manhattan and comes three times per week to tutor Hannah and one of the other children at the house. She tells me every day how keen a learner Hannah is and how hard she is working at learning how to read. I am so thankful to Mrs Harvey, Hannah's grade one teacher at home, as she put together a large package of work for Hannah to do while she is here. It has come in really handy. Great job Mrs Harvey!!!

I met with the New York Giants event coordinator today and he confirmed that they would like me to make a short speech at the Oct 20th event. Short, ha, that will be a real challenge for me. I will have to stick closely to my prepared material otherwise I may ramble on about what a really awesome place Ronald McDonald House is. To boot, Eli Manning and about 20 of the super bowl team will be at the gala and I will receive an autographed football as a gift. I am so excited. Hannah, ya well it will be just another place where daddy tells a story to a large group of people. At times she is really interested in participating and others, not so much. There will be 10 other families at the event and I hope that Hannah has fun with the kids who are there. I know my brother will be excited to hear of this event as he has being a NY Giants fan for years, hehehe, I get to meet them. Unfortunately, I won't be here the for their next home game, but maybe when we come back in December they will have a home game that I can go and see.

Today saw the departure of Hannah's latest New York best friend, Katherine. She and her mom headed back to Albania this morning. It is kinda strange getting to know people so quickly and in some ways intimately one day and then two weeks later they head back to their home and we will likely never see them again. We get to know a part of their story that is so fantastically complex and then it stops. It will take some time for me to consider how I hold their stories as they are important to me and at the same time hold them lightly so as not to burden them with my need to know how the story progresses. Many of these kids will be back and forth to New York as many have cancers that relapse 3, 4 and 5 times before it is finally eradicated or there is nothing more that can be done and they go home while their disease runs its course and they die. It is so unreal and yet I am thankful to be here. The kids and families that I have met are really incredible. They are living life to the fullest and not looking back. They have hope, and I am thankful for that. Many of the families I have got to know live a life of faith and so I pray that hope in Christ brings them through this experience regardless of the outcome.

For those readers who have taken an interest in Hannah's diet, she continues to eat mac and cheese fortified with protein powder twice a day. She is eating strawberries, grapes and little tomatoes two or three times a day and today said she liked some of the sliced turkey I brought home from the deli. We tried some cucumber the day before yesterday, but she couldn't bite it into manageable pieces so we have given up on it for a while. She can also manage pancakes and waffles so we are rotating through those on a daily basis. I would prefer she ate hot cereal in the morning, but she gets to choose.

The next two weeks should go by quickly. We have the family here until late Tuesday night and then Kathleen, Judy's sister, arrives for a few days. When they have all gone home, we should have less than a week before we head home ourselves.

Well its tea time in New York and I'll sign today's entry off.

TTFN
Hannah and John

Tuesday, October 7, 2008

Monday's News

Hi, we met with Dr Pocock and Dr Grayson this morning, 9 am. It took everything in Hannah to get ready on time, but she did it. She got up at 7:15 and was ready to go by 8:25. This included getting dressed, eating breakfast, rinsing her mouth with a terrible tasting oral rinse and having her appliance activated. It usually takes Hannah an hour just to rinse her mouth and have her appliance activated. We made it to the hospital by 8:45, a record time for rush hour.

Dr Grayson was a little late this morning so Dr Paul Pocock and I had a good chin wag about how Hannah's treatment has gone and how we, as Canadians, have somethings to learn about the customer service end of medical care and the accountability factors that come into play when you are paying for your own care. For those who don’t know Dr Pocock, he is Hannah’s champion. Dr Pocock initially referred us to Drs Grayson and McCarthy, and he has made the effort to travel to New York to learn about this procedure and bring the learning back to Vancouver to benefit other children requiring the same kind of surgical/orthodontic intervention.

The appointment was very productive, I learned about some the mechanical challenges that the distraction process presents and how they mediate the body’s natural tendencies to want to put everything back into it original place, even if that place is totally dysfunctional. I heard Dr Grayson explain how they use elastics to pull the growing bone into a vertical orientation. Dr Grayson used the word vector, a dreaded term that I studied in my many years of studying physics in High school and university. I never thought I would ever have a need to understand the concept of force as applied to a movement in a specific direction. I actually understood what they were talking about. Drs Grayson and Pocock talked about what was going to happen over the coming weeks and then what will happen after the consolidation phase(the 12 week period between the end of the appliance activation and when the appliance is removed), when we come back to NYC. Paul encouraged us to really consider coming back as having the device removed in Vancouver may burn many professional bridges for Hannah if we do not come back.

I asked about how long we would need to be here in December and Dr Grayson seemed to think a week would be good but there may need to be some more days then just 5 working days as the fabrication of the second orthodontic devise is complicated and labour intensive. The time back in New York will also be dependent on when Dr McCarthy can get OR time. Lets hope they can get it all done in one week. As always, Hannah was a star in the chair. She had photos taken by Dr Pocock and then Dr Grayson demonstrated how the elastics go in and how they act to cause the bones to line up as they need too. The bone is growing but it seems that that the anticipated gap that needs to occur between her upper and lower jaw has not opened up yet. I expect that we will see some of that movement on Friday when we have out appointment. We have our next an appointment on Friday at 8:30 am. My guess is that Judy and the kids will not going to be coming to that one as they will have just arrived into New York.

The rest of today had a great high and a serious low. The great high was a request that I received to consider making a presentation at Ronald McDonald House New York Giants NFL Fundraiser on Oct 20th. They would like me to be the parent to make a speech in front of all those who are gathered. I spend the first 3 hours of my afternoon today writing a draft speech. I then spent the last two hours of my afternoon trying to fax my special voting request to Ottawa for the upcoming election. That was the serious low. I got 5 straight hours of busy signal and so can not vote in next weeks Federal elections. It's my own fault but I really thought there would be more fax lines available to manage the anticipate rush of last minute applications.

Hannah had her second tutoring lesson today. Her teacher’s comment to me was that Hannah catches on quickly. Obviously, she is a brilliant kid! Hannah also joined in to the Mad Scientist’s soda making experiment and made a non carbonated grape pop, which she gave to me. She is having a great time with her friend Katherine, but sadly Katherine and her mom are head back to Albania soon. Hannah has being told the news but when you are six, a few days still has little relevance in your life. She will really miss Katherine and the time they spend together. There are of course lots of other kids at the house but not many six year olds. Many of the current house mates are 4 and under and there are now a number of teenagers who have come to stay at the house. It is a never ending intake. It breaks my heart!

Hannah and I were successful in getting Rangers tickets for the New Jersey game on Monday night. So when the rest of the family is here on the weekend its Mama Mia on Saturday night(Judy, Rebekah and Keziah), Spamalot (Judy, Zach and Rebekah) on Sunday and hockey (Zach and I) on Monday. How was we going to see the rest of NYC with so little time remaining? Priorize!

We hope everyone had a good day today.

TTFN

Hannah and John

Monday, October 6, 2008

Lots of pictures!!

John's been busy uploading pictures at the hospital today. So here is the link to have a look at them. http://picasaweb.google.com/John.Davies001/BreakfastBeforeAHardDaysWorkAtTheAppleOrchard#

and
http://picasaweb.google.com/John.Davies001/CentralParkOnAMonday#

I think we are going to have to get a puppy now.
Enjoy
Only three more sleeps until we leave!!!!

Sunday, October 5, 2008

The Apple Orchard






On Saturday Hannah and I hooked up with our Trinity Grace Church family and headed out Connecticut to pick apples in an orchard. We travelled for about an hour and half to north and east to a small town just up the road from where the Woodstock festival took place back in the 60's. There was some hope that the leaves would have turned into their fall glory but we were a few weeks early. You could see the potential for the fall change but there was still a lot of green in the leaves. The orchard was on a farm and the owners have done a great job at making a place for all members of the family. There was a great ride that they created for kids where they make a cow train out of 25 gallon plastic drums. They towed about 15 of the drums behind a tractor throughout the farm. Hannah and the other kids from the church got on and had to be dragged off the train, they went for 4 circuits. The farmers had great two corn mazes as well as a giant slide. Everyone had a really great time. Hannah made a couple of great new friends and we have already set a play date for Monday afternoon.






Hannah's jaw is starting to change. We had an appointment with the surgeon and orthodontist and they both commented on the change to where Hannah's chin has moved to. I couldn't see the change on Friday, but on Sunday I could actually see that it has moved towards the middle.







After church on Sunday, Hannah and went downtown and get show tickets in anticipation of every ones arrival on Friday. We got tickets for Spamalot for next Sunday night but couldn't get any other discount tickets as it is Columbus day next weekend so the many of the theatres do not allow for cheap tickets. So we will go back tomorrow with a pocket full of cash and but some more tickets, at full price. Hannah and I will also try and get tickets for the New York Ranger's game on Friday night so Zach can see the famous Madison Square Gardens, okay so Zach and I can see the Gardens.







Dr Pocock, Hannah's orthodontist will be at Hannah's appointments on Monday as he has come to learn about the protocols that go along with the bone distraction procedure. This was one to the objectives that we hoped for in coming to New York for Hannah's surgery. It will good to see him and for him to see one of his patience in the chair as he enhances his orthodontic practice.







Hannah is counting down the nights until everyone arrives and we are so excited for them to be here with us. We have missed them terribly and wait in great anticipation of their arrival.







TTFN







Hannah and John

Friday, October 3, 2008

New Pictures to have a looksee at....

John posted new pictures yesterday. Here's the link: http://picasaweb.google.com/John.Davies001/StatonIsandAndTuckerTheDog#. Hannah took the pictures of Tucker the dog - he's such a lovely dog - he loves to lick Hannah's legs. Also here's a quote from John's email to me this morning - it made Becks and me laugh.

"Good morning. We had a good night last night. It took an hour to get Hannah to rinse her mouth and let me turn the key. The tears were limited to 22 gallons, not bad for a Thursday night. I am sure she will run out of tears any time now. Good thing we had her ducts probed! We have an appointment this morning at 11 and we have turned the key but the rinse is looking pretty unlikely. If we can get the rinse done it will have being a 40 minute process, a new world record. Lets see if we can set that new record today."

Thursday, October 2, 2008

Lady Liberty Rides with Mary Popins






Its Thursday and I have activated Hannah's device 7 times and caused her jaw bone to grow an amazing 3.5mm. Hannah hates the process. She is really uncomfortable when I actually turn the screw and so we have to take a lot of time to prevent the activation times from becoming a major power struggle. What I have been doing is simply holding out my hand to Hannah and asking her to take my hand and let me turn the screw. It is really an exercise in trust. I have to allow her time to prepare for each turn of the key and she has to trust me that I will not force her in anyway. It is really hard to keep that inviting posture without stepping over the line. It is even harder when you have a dead line so you can be on time for your morning doctors appointment. On Wednesday this week we saw the orthodontist and got "job well done" affirmation.






Wednesday afternoon we hung out at home and then Wednesday night we went to #17 Cherry Tree Lane. located in the New Amsterdam. There we met an amazing lady nanny named Mary who looked after two young children named Jane and Michael Banks. We also met Mr and Mrs Banks and learned all about the story of their family from a time long ago. Mary was a wonderful Nanny who had many interesting friends. Her most interesting friend was a man named Bert, who was a chimney sweep. You don't meet many chimney sweeps now a days but Bert was the real thing. I think that Mary and Bert were actually more than just friends but maybe they had known each other for so long that it seemed that they were a couple. Anyway, the Banks family had several problems that they shared with Hannah and I, including problems with Mr Bank's work. He made some hard decisions and his boss got very mad and suspended him from work. Thankfully Mr Banks didn't lose his job in the end and he learned some really hard lessons in this time of trouble. One thing that Hannah and I noticed was that the Banks family all sang a lot and they danced everywhere they went. None of this sit down on the couch to play nintendo and talk about life, oh no. The Banks had all their friends and neighbours over to sing and dance and tell an incredible story of how their family went from having terrible problems to having few problems at all. It was a very colorful story with great effort made to give us images far away places in very old times. Boy oh boy was it a great evening. I'll always remember Mary as she pops in and out of our story of the time that Hannah and I went to New York City.






Today, Hannah and I went with Hannah's friend Maddie and her dad, down to the Staton Island Ferry for a ride across the harbour for lunch. It was a beautiful day for a boat ride. While we were waiting to catch the ferry we saw a World War 2 aircraft carrier, the Intrepid, being towed to its new permanent dock at Pier 86. The Intrepid is a museum with several aircraft on permanent display. It has just had a $186 million retrofit and is said to be a really cool place to see. Unfortunately for Hannah and I we will not be able to go on it as it won't re-open to the public until Nov 11. Maybe we will go on it when we come back to New York in December.







Hannah also started some more focussed schooling today. Ronald McDonald House arranges for tutors to come in and work with the kids at the house if parents wish. I asked if a tutor could be arranged and Deb arrived today. While she is not as magical as Mary Popins I think she and Hannah will get along famously and Hannah will actually get some work done.







On Friday we have more Doctor's appointments so who knows what we'll get up to, stay tuned.







Hannah and John



Wednesday, October 1, 2008

Wednesday's email from John.

Hannah saw Dr Grayson and his intern today. The intern did most of the work and was very nice. Hannah will see both Grayson and McCarthy on Friday at 11 am. The report was good. There is not much change in her bite alignment at this time as we have only turned the key 5 times for a total of 2.5 mm. I have been negotiating with Hannah every day as to what I am going to make her endure. At this point getting the antibiotic into her has been a priority as is turning the key. So when we were at the office today I asked the orthodontist to highlight for Hannah the importance of rinsing her mouth with the chlorhexidine dental rinse, this is the one that I used pre op and she protested muchly. So twice a day, starting tonight she agreed with the doctor to use the rinse. I hope she remembers, cause I will be reminding her all day that she made an agreement with the doctor. Her breath is a "wonderful" smell at this point but if she doesn't rinse then it will stay smelly. The Dr did say her hygiene was pretty good, even if she is not using the rinse. Lets pray that I can get her to use it 2x per day.
On the food front, she ate half a bowl of cream of wheat this am, with cinnamon sugar of course. I could have probably got her to eat more but time was tight as we had to be at NYU for 9:30 and she had to be woken up at 8. Needless to say she did not get up on the right side of the bed. Lunch today was KMC, the creamy variety. She ate a bowl and a half. Yeah!!! and drank 1/2 a glass of water.
When Hannah woke up she asked if we could go to the museum today and I was all over that. By the time her appointment was over and we were heading home for lunch, she was pretty clear that the museum was out for today. I found that hard. If she gets back to the house at any point getting her out again is almost impossible. So my strategy will be to find every restaurant in the city that serves mac and cheese so I never have to bring her home for lunch. LOL

Monday, September 29, 2008

A bit of news from Monday and some more pictures.

I had a lovely conversation with Hannah this evening. Its amazing the difference in her voice from Friday to today. Apart from being a bit muffled in tone and volume, due to the splints in her mouth, she sounds just like her. I mailed her Pop up Pirate, her favourite game, and it arrived today - a big surprise as the post office said it would arrive on Wednesday- so we chatted about her game and how her day went today. Here's a bit of John's email summary of the day:

"Sorry that I didn't call earlier in the day but I realized that if I brought Hannah home directly from the appointment that I would not get out for the rest of the day. We walked up to 34 adn Broadway and then up to Central Park. We played at the park and then went to the petting zoo and the regular zoo. Hannah was not in the best space as the afternoon wore on and has not had an appetite all day. She got 3/4 of a cup of fortified milk shake down and a couple of cups of apple juice. I bought some baby food today in hopes that I can get her to try some puree food.

Hannah did really well at her appointment. The xrays she had today showed that everything was just as it needed to be. Both Drs McCarthy and Grayson had a look at how things were and gave a thumbs up. There were substantially more people at the conference today than there were when we were there two weeks ago. Hannah did a great job! She sees Grayson on Wednesday afternoon and McCarthy on Friday morning. I learned how to turn the key. Really simple!!! Twice a day (1/2 mm each turn). Dr McCarthy suggested that she would not have any pain when I turn the key. Maybe no pain but she is definitely uncomfortable.

When we got home today there was a message from the tutor coordinator. Tuesday and Wednesday are school holidays here due to the Jewish Holiday so she will start working with the tutor on Thursday. She will see the tutor 4 times per Monday, Tuesday, Wednesday and Thursday. They will work together for an hour per day."

Here's the link to some more pictures of their day out today. http://picasaweb.google.com/John.Davies001/MondayAtTheCentralParkZoo#
Enjoy!

Sunday, September 28, 2008

A quiet Sunday

Hannah was up and ready for her day at 7 am.  She seems to be totally past her surgery.  She hasn't had much of an appetite today but her energy level has stayed on high all day.  We enjoyed church and receive many cards from the kids of the church wishing her well and a quick recovery. I talked to 5 or 6 folks about being here in New York and what it has meant for us.  It is really more than just a medical procedure.  Hannah and I have lots to learn and lots to share while we are here.

Hannah spent her entire afternoon playing barbies with her friend Katherine.  All day they were in and out of our room to getting clothes and other accessories for a great Barbie day. Dinner was a fortified tomato soup meal and fortified chocolate milkshake. I tried to give her a blended mac and cheese meal but it was not going anywhere near her mouth. While Hannah really likes mac and cheese she does not seem interested in drinking it.  Monday morning will see Hannah have her next doctor's appointment.  She will have her device activated for the first time. The "key" will be turned twice a day.  Pray that she will not experience too much discomfort or pain.

That's today's update.
Hannah and John

Saturday, September 27, 2008

An email from John

Hi Honey, it is just after 10 pm here and all is well. Hannah had a great day today. She had puree cereal for breakfast, lots of applejuice, a chocolate milkshake with protein powder for her mid day meal, her late day meal was tomato soup and more protein pwd and for dinner more chocolate and protein shake. The way I saw todays nutritional content, she got calcium, protein, fruit and fat, no veggies but they combine with fruits so all in all not bad. She did want to have some mac and cheese so I cooked and blended some but when it came time to eat it she was already through a bag of shake and I think she was honestly full. At bedtime tonight she was asking if I could puree some chocolate for her tomorrow, it was so cute.
Josh, from church came by today and hung out for a couple of hours. He is a newly wed, recent grad so my guess would be in his early to mid 20's. He was totally blown away by the house and the ministry that happens here. I think God really moved in his heart and place some important seeds in his spirit for the Trinity Grace community. I really hope so, there are so many young people who could make a difference in the lives of the kids and families here. Anyway we had a lovely visit. Hannah hung out with us for a while and then took us tot he play room where she and the other kids were just hanging out. It was a rainy day here. She played kitchen with several other kids and seemed to have a great time. Katherine was gone all day and I think Hannah was really hoping they would have a chance to play today, oh well, maybe tomorrow. I have stopped trying to figure out who is new and who is not. I talked to a dad today who I have never seen before and it turns out they have been here for months. I guess some kids are in hospital and home to bed so unless you are at the door when they come home you would never see them.
Hannah really did find her stride today, it was so good to see. I noticed at bedtime that she has lost some weight so I am going to really try and get her to eat 5-6 times a day. I hope she will cooperate. She hasn't made too many complaints about her antibiotic today, but man is it hard getting it into her 4 times a day. It is suppose to go in every 6 hours but she sleep for 10 hours and I refuse to wake her up to give her drugs. So I guess she gets it 4 times in 14 hours. Thats about every 5 hours. It kinda camps our entertainment style a bit. I guess I could get a cold pack and bag and just take it with us when we are out.
I got discount coupons today for 3 shows. Spamalot, at $65 a ticket, $60 per ticket for Hairspray and $60 for the Little Mermaid. Not bad prices. I have a link to the site that the coupon are on and I will send it along later.
I didn't blog today so this is your daily update.
Signing off, your Big Apple correspondent

New Photos

John has posted new photos on Picasa. Here's the link to have peek: http://picasaweb.google.com/John.Davies001/NewAlbum260908812PM#. There are pictures of the days before the surgery - time at the park and when the big top circus came to Ronald McDonald House! There are also pictures of Hannah getting ready for her surgery and the pictures of her in the ICU.

Thursday, September 25, 2008

A Safe Return Home


Hannah was discharged today from the hospital, the earliest possible day. The doctors all felt that there was no reason for her to say in hospital and that the environment there was not a peaceful place. I can only agree. Hannah bunked in with three other children on Wednesday night. Two of the kids slept relatively peacefully, however a little baby adjacent to Hannah's bed had a hard night and cried lots. This woke Hannah up at about 1 am and it took her 3 hours to get back to sleep. For a little girl who hard her jaw broken yesterday she is doing remarkably well. She's not keen on taking any kind of medication, even ones that she admits help her feel better. So getting her to take her pain medication on a regular schedule didn't happen last night and certainly didn't happen today. Pray that she will find a way to accept having to take medication even if she doesn't really want to, especially her antibiotics.


So the drill today is clear fluids, tomorrow Hannah will have her choice of ice cream, pudding, jello or any other thick or thin liquids has wants. Same for Saturday. Sunday, I will attempt to get her to eat some puree mac and cheese. Hannah on the other hand is starving now and would like her mac and cheese tonight. Oh the tears will roll for Kraft. I wonder if there is a marketing angle here? Na, maybe not. Sick kids eat puree mac and cheese mmm mmm good.



There not really anything else to share today unless Hannah wakes up from her nap ready to roll. In that case we will venture to the pharmacy to pick up her prescriptions.



TTFN

Hannah and John

Wednesday, September 24, 2008

Surgery Day

Hannah's surgery was this morning and it all went very well - she came through it all beautifully. Dr. McCarthey was very pleased with how everything went and he was able to insert the semi-buried device, which is the one that we wanted. He said that there was a minimal amount of bleeding and that it all went well. Dr. Grayson finished the time off in the OR by bonding the splints to her teeth and then she was moved to the ICU at 1pm, their time. John called me from the ICU around 4pm his time to let me know that she was doing well and so that he could hold the phone to her ear so she could hear my voice. I told her I loved her and then was surprised when I heard her sweet voice telling me she loved me too. We were told that it would be a couple of days before she would be able to talk, so that was a lovely surprise to hear her say a few things. John said her main complaint at this point is that she's really hungry but it won't be until tomorrow before she can have anything and even then its only clear fluids. She won't be impressed. We have always found that she in at her hungriest after aneasthetic. So she's doing well. Thanks for all the prayers - she is being well covered.

Tuesday, September 23, 2008

Tomorrow's the Day



It's Tuesday night and we're ready to go. Bags are packed, supplies are in the fridge ready for Hannah's return from the hospital, NYC church family on board helping out with some meal preparation. All is good, oh, except Hannah's not interested in having surgery. If she goes to the hospital for a few days she will miss something at the house and that ladies and gentlemen, is totally not okay. Life is about activities, friends, and what's on the "chalk board" for tomorrow. Each morning before we have breakfast, Hannah and I go down to the foyer and see what is on tap for the day. Today there was an afternoon tea from 2-5, mom's support group at 4, new guest orientation at 6 and tickets to see the Mets play at Shea (bus leaving at 6). No sponsored evening meal tonight so we'll have to fend for our selves. Hannah's life revolves around what is going on in the house and can she and her friends attend? She is loving life here and surgery tomorrow is going to be an awful inconvenience.




Monday night the Heller Family Foundation hosted a carnival here at the house. The living room was transformed into a place of fun for the evening. The Heller's put out an incredible meal and then had all the children come to the carnival. There was no midway or rides but there were carnival games galore. Ring toss, bowling for points, basket ball hoop shooter to name a few. They had twisted mirrors, a mime, a juggler and a magician. Lots of Candy floss, cookies and other assorted sweets were demolished by all who came. Each child who played a game won a prize and received tickets that they redeemed at the end for their choice of parting gifts, Hannah chose the Holiday Barbie or course. Each family also received a $25 gift certificate donated by the Heller's for one to two local merchants (a grocer or pharmacy). It was a total blast. Everyone was so charged up by the end of the night that it took Hannah until 10 o'clock to wind down and fall asleep.





Wednesday is Hannah's surgery as I mentioned above. She has to be at the hospital by 6:30 am and should be out of the OR by 1 pm. I am "roomin in" at NYU on Wednesday and Thursday so there won't be a post from me until Friday at the earliest. Pray that Hannah's surgery goes well, that the device that is implanted is the lesser obvious one, and that the pain and swelling will be minimized so she can get back to living life to the fullest in the Big Apple.





That's it for now.


Hannah and John