This morning was Rosies cardiac appointment at Children's.
She has decided without a shadow of a doubt that she just does NOT like nurses and doctors. She had to sit in a special little x-ray chair that resembled "Old Sparky" and that is when all the fussing started and it continued all the way through her her EKG. I have to say that for a children's hospital and one of the top pediatric hospitals in the country, no less, the nurses there are not at all kid friendly......very odd.
Anyway the bottom line is this: her heart is no better. She does have a pectus carinatum. She wiggled so much during her x-ray that it was hard to tell if she has scoliosis or not. Her spine was very crooked on the film but the doc wasn't sure if that was just because she was fighting us.(that was not the point for the xray but since we could see her spine we decided to check. The X-ray showed her heart to be enlarged specifically the right ventricle. Now I am no radiologist but I can tell you that this kid has a HUGE heart cos we saw the films. Andie is with us and she knows abit more about this than I do and she even commented. Ahhh, my little girl is all heart....literally. That will change after her surgery and eventually her body will grow into her heart and her heart will slowly return to normal size.
On September 29th Rosie Posie will be heading back to Children's and she will undergo a procedure in the cardiac cath lab and will stay there overnight and she will leave the next morning......(drumroll please) with a healthy heart.
So there you have it. We have a date and we are ready to do it. Jacob, of course, looked most uncomfortable with the news but with all the right meds I assured him he won't feel anything either.
25 Aug 2008
23 Aug 2008
Some Of My Thoughts
A few weeks ago our social worker asked us if it was at all overwhelming having a special needs child. Our immediate answer was NO. It really isn't, we don't think about it. Rosie has been given a clean bill of health and her heart condition doesn't restrict her at all. Yes, we know she has a few things going on but other than her PDA all the other things are cosmetic as they do not affect her in any way.
Monday is her cardiac appointment, followed 2 days later with a well baby visit. Am I concerned? yes I am. Not because I think they will find anything but because Rosie really gets upset at the doctors office. She screams, she cries and she just gets very uncomfortable. There is nothing we can do about it. We hold her tight and comfort her once it is over and done with but she has to have all these tests done and we have to hold her down. I hate it, I really hate it. I could cry. I don't but the tears are right there. So in answer to the question, is it overwhelming having a special needs child, the answer is still no but having to take any child to a doctor as much as we have had to take Rosie and see that child get so upset hurts like hell.
If we knew a little bit more about her first year it might make it easier. We don't know how many times she was hospitalised, we know of at least 2 and the worst part is we don't know if anyone stayed with her or if she was just left alone there. I am guessing she was alone, which will not help her fear of doctors. In time the fear will subside and she will be a happy little girl whilst she is there but that time hasn't arrived yet so I have to put my game face on and deal with it all.
We have been playing doctor with her for the last few days and we have all been wearing stethoscopes, Rose included. Will it help? Who knows but it can't hurt.
To my sweet little Qi Qi.
I am sorry you have to go through this and I would do anything to avoid it but we have to make you better and make your heart strong. I promise you that very soon this will all be done and all these scary visits where people poke and prod you and strangers touch you will be a thing of the past. Until then I want you to know that Daddy and I are always right there for you, to wipe up your tears and your runny nose and to shower you with kisses adn hold you tight when it is all over.
You are such a sweet little girl and we all love you so much. You are much too smart for one so young and incredibly funny too. Your cheeky ways get you out of a lot of situations and you sweet smile lights up the room. I love that you are trying to say all the words that we say. Your favourites are, gray for grapes, lie for lights, Booboo for boobies, yes my dear sweet child you are infatuated with boobs even Lilys. You say dogogwoof, for dog, and when we hear uh-oh it is usually just before your bath when you are running around nudey and you have just pee'd on the floor, it makes your sister laugh so much. You have just started to repeat Wo Ai Ni (I love you , in Chinese) and you say, ai ni mama. You blow kisses at the people you want to and liberally dish out kisses to us.
You are the living proof that dreams really do come true.
I love you sweet baby girl,
Mummy.
Monday is her cardiac appointment, followed 2 days later with a well baby visit. Am I concerned? yes I am. Not because I think they will find anything but because Rosie really gets upset at the doctors office. She screams, she cries and she just gets very uncomfortable. There is nothing we can do about it. We hold her tight and comfort her once it is over and done with but she has to have all these tests done and we have to hold her down. I hate it, I really hate it. I could cry. I don't but the tears are right there. So in answer to the question, is it overwhelming having a special needs child, the answer is still no but having to take any child to a doctor as much as we have had to take Rosie and see that child get so upset hurts like hell.
If we knew a little bit more about her first year it might make it easier. We don't know how many times she was hospitalised, we know of at least 2 and the worst part is we don't know if anyone stayed with her or if she was just left alone there. I am guessing she was alone, which will not help her fear of doctors. In time the fear will subside and she will be a happy little girl whilst she is there but that time hasn't arrived yet so I have to put my game face on and deal with it all.
We have been playing doctor with her for the last few days and we have all been wearing stethoscopes, Rose included. Will it help? Who knows but it can't hurt.
To my sweet little Qi Qi.
I am sorry you have to go through this and I would do anything to avoid it but we have to make you better and make your heart strong. I promise you that very soon this will all be done and all these scary visits where people poke and prod you and strangers touch you will be a thing of the past. Until then I want you to know that Daddy and I are always right there for you, to wipe up your tears and your runny nose and to shower you with kisses adn hold you tight when it is all over.
You are such a sweet little girl and we all love you so much. You are much too smart for one so young and incredibly funny too. Your cheeky ways get you out of a lot of situations and you sweet smile lights up the room. I love that you are trying to say all the words that we say. Your favourites are, gray for grapes, lie for lights, Booboo for boobies, yes my dear sweet child you are infatuated with boobs even Lilys. You say dogogwoof, for dog, and when we hear uh-oh it is usually just before your bath when you are running around nudey and you have just pee'd on the floor, it makes your sister laugh so much. You have just started to repeat Wo Ai Ni (I love you , in Chinese) and you say, ai ni mama. You blow kisses at the people you want to and liberally dish out kisses to us.
You are the living proof that dreams really do come true.
I love you sweet baby girl,
Mummy.
21 Aug 2008
My Big, Big Girl
School finally started for the year and Lily marched off into first grade with the same enthusiasm that she exudes for all new things.
Ready to go.
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Her desk
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Saying bye - bye to Daddy
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Saying Bye-bye to Rosie
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For some reason I found it very difficult to say good bye to her. I got all choked up. First grade just sounds so big and I can't believe that she is so big. Oh well. She loved her first day and her teachers so off we trot into the next school year.
Ready to go.
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Her desk
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Saying bye - bye to Daddy
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Saying Bye-bye to Rosie
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For some reason I found it very difficult to say good bye to her. I got all choked up. First grade just sounds so big and I can't believe that she is so big. Oh well. She loved her first day and her teachers so off we trot into the next school year.
19 Aug 2008
It Rained.
Yes, that's it. The big storm was nothing more than gallons and gallons of rain. The media just hypes things up so much and it makes people act thoroughly nutty. Oh, it did get a little bit windy last night and I loved every second of it. I love hearing the wind blow when I am laying in bed cos it reminds me of home and being a little girl.
We are used to getting alot of rain here but it is usually accompanied by thunder and lightening but yesterday and Monday we didn't have either of those so after being housebound for nearly 2 days we did what all responsible parents do and we dressed the kiddies in some rain gear and let them splash in the puddles. We had to move the baby ducks out of the way first. They got confused and thought this neighbourhood was their lake.
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It might look cold but it was 60 degrees.
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Following this little jaunt the kidlets got taken back indoors and disinfected.
In other news I have a new camera. It isn't anything fancy but it can go underwater and is also shockproof. I think that means it won't break if I or Lily drop it as opposed to it won't gasp if you take an ugly photo. I really can't wait to take it in the pool with me. I would love to see Rosie under the water. It takes clear photos
and has lots of fancy features so once I get used to it and we can actually go outside again I will start playing.
Testing the video on the Flying Lily
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My little girl starts first grade in the morning.....sigh.
We are used to getting alot of rain here but it is usually accompanied by thunder and lightening but yesterday and Monday we didn't have either of those so after being housebound for nearly 2 days we did what all responsible parents do and we dressed the kiddies in some rain gear and let them splash in the puddles. We had to move the baby ducks out of the way first. They got confused and thought this neighbourhood was their lake.
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It might look cold but it was 60 degrees.
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Following this little jaunt the kidlets got taken back indoors and disinfected.
In other news I have a new camera. It isn't anything fancy but it can go underwater and is also shockproof. I think that means it won't break if I or Lily drop it as opposed to it won't gasp if you take an ugly photo. I really can't wait to take it in the pool with me. I would love to see Rosie under the water. It takes clear photos
and has lots of fancy features so once I get used to it and we can actually go outside again I will start playing.
Testing the video on the Flying Lily
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My little girl starts first grade in the morning.....sigh.
17 Aug 2008
Here We Blow Again - Updated
This post could also aptly be titled, Oy Fay!
The 2008 Hurricane season is rearing it's ugly head with Fay. Florida is under a hurricane watch and we are stocked up, with generator at the ready, the hatches are battened and everything is packed away from the garden. Now we get to play the waiting game. It isn't a strong storm but it is big and it is wet. Not much to do but wait and see.
Lily's first day of school has been cancelled and she is sad about it. Heading into first grade is a big deal and she cannot wait. I also think it has something to do with all the new stuff that she has and is ready to strut her stuff with. This year she decided that backpacks were soooo kindergarten (her words) and she chose a messenger bag. She can't wait to see if anyone else had the same idea as her and she is really hoping to be different.
Wait, wait, wait.......wait some more. Oy Vey, I mean Fay.
It is now almost 24 hours later and we still don't know if we are a target for Fay or not. The weather gradually deteriorated after midnight and now we have lashing rain but that's all. I don't think it will change now until tomorrow. Flooding will be the big problem and their isn't much that we can do about. Since I am always one to see the brightside of things: it sure is fun dashing through the puddles in my new car!!!!!
The 2008 Hurricane season is rearing it's ugly head with Fay. Florida is under a hurricane watch and we are stocked up, with generator at the ready, the hatches are battened and everything is packed away from the garden. Now we get to play the waiting game. It isn't a strong storm but it is big and it is wet. Not much to do but wait and see.
Lily's first day of school has been cancelled and she is sad about it. Heading into first grade is a big deal and she cannot wait. I also think it has something to do with all the new stuff that she has and is ready to strut her stuff with. This year she decided that backpacks were soooo kindergarten (her words) and she chose a messenger bag. She can't wait to see if anyone else had the same idea as her and she is really hoping to be different.
Wait, wait, wait.......wait some more. Oy Vey, I mean Fay.
It is now almost 24 hours later and we still don't know if we are a target for Fay or not. The weather gradually deteriorated after midnight and now we have lashing rain but that's all. I don't think it will change now until tomorrow. Flooding will be the big problem and their isn't much that we can do about. Since I am always one to see the brightside of things: it sure is fun dashing through the puddles in my new car!!!!!
15 Aug 2008
Bike Ride
I love bicycle riding, I always have. One thing I looked forward to when we were waiting for Lily was the day that I could put her in a bike seat on the back of my bike and take off. She is a little bit too big for that now and she rides her own bike so now we get to ride with her and strap Rosie on the back.
Hideous photo of me I look like the broadside of a barn, but Rosie looks sweet.
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Yesterday was a perfect day for a bike ride and a picnic so we put the bikes on the back of the car and headed to one of our favourite trails. We took lots of bread and fed the birdies, well that isn't quite true because I hate it when birds flock so I stayed a safe distance away with Rose and Jacob and Lily fed the ducks. Rose did get close to them but not in the thick of things. It was such a lovely afternoon. As we were having our lunch 3 kayaks went by on the canal and Lily realised that it was some of our friends, another little girl from China and her Dad. It was great to see them and they pulled up on the bank and joined us for lunch for a few minutes.
Keeping my distance!
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Since the camera is on the fritz it won't zoom so I had to get a bit closer
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Rosie getting quite brave, at least by my standards.
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Bye Mike and Sofia.
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Later on we went to Lily's school to meet her new teachers and see her classroom and she is very happy to see that alot of her friends are still in her class and she seems to be quite happy with her teachers.
Off to the beach for a while and then Lily has her riding lesson. More photos later.
Hideous photo of me I look like the broadside of a barn, but Rosie looks sweet.
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Yesterday was a perfect day for a bike ride and a picnic so we put the bikes on the back of the car and headed to one of our favourite trails. We took lots of bread and fed the birdies, well that isn't quite true because I hate it when birds flock so I stayed a safe distance away with Rose and Jacob and Lily fed the ducks. Rose did get close to them but not in the thick of things. It was such a lovely afternoon. As we were having our lunch 3 kayaks went by on the canal and Lily realised that it was some of our friends, another little girl from China and her Dad. It was great to see them and they pulled up on the bank and joined us for lunch for a few minutes.
Keeping my distance!
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Since the camera is on the fritz it won't zoom so I had to get a bit closer
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Rosie getting quite brave, at least by my standards.
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Bye Mike and Sofia.
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Later on we went to Lily's school to meet her new teachers and see her classroom and she is very happy to see that alot of her friends are still in her class and she seems to be quite happy with her teachers.
Off to the beach for a while and then Lily has her riding lesson. More photos later.
14 Aug 2008
My Blog Book Is Here
My blog book has finally arrived and to say that I am thrilled with it is an understatement. When I opened the box and unwrapped the bubble wrap I literally gasped because it is that fabulous.
It has had to be done in two parts because apparently it is rather large. I only have part one now and I am really impatient for part two to arrive. I wanted the first book but since I didn't know what I was missing the wait was fine, a little long towards the end but nothing I couldn't cope with. But now, I want my book and I want it now. Sorry Amy!
If any of you are thinking about having your blog turned into a book, do it and use, Book my Blog because Amy and Kristen are really rather incredible and they are nice as well. You never get those 2 things together anymore.
Having my blog in book form is fantastic I can lie in bed and read it and all of my favourite people are bound forever in print in this truly special book. Lily loves it and calls it her story, which it really is because even though it chronicles the wait for Rosie part one is all about her. The quality is first rate and I just can't say enough good things about it.
Here, judge for yourself: (a little disclaimer: my camera is on the fritz, actually I think it is on it's last legs, so the photos are not that good.)
The Front Cover
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The Back Cover. (yes, we know there is a big ole' typo smack in the middle of it. It is nothing that cannot be fixed and it is my fault NOT their fault.)
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The Spine
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A quick glimpse inside
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It is literally my whole blog, all of my yipping, turned into the most magnificent book.
Amy and Kristen we love it. Thank you.
It has had to be done in two parts because apparently it is rather large. I only have part one now and I am really impatient for part two to arrive. I wanted the first book but since I didn't know what I was missing the wait was fine, a little long towards the end but nothing I couldn't cope with. But now, I want my book and I want it now. Sorry Amy!
If any of you are thinking about having your blog turned into a book, do it and use, Book my Blog because Amy and Kristen are really rather incredible and they are nice as well. You never get those 2 things together anymore.
Having my blog in book form is fantastic I can lie in bed and read it and all of my favourite people are bound forever in print in this truly special book. Lily loves it and calls it her story, which it really is because even though it chronicles the wait for Rosie part one is all about her. The quality is first rate and I just can't say enough good things about it.
Here, judge for yourself: (a little disclaimer: my camera is on the fritz, actually I think it is on it's last legs, so the photos are not that good.)
The Front Cover
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The Back Cover. (yes, we know there is a big ole' typo smack in the middle of it. It is nothing that cannot be fixed and it is my fault NOT their fault.)
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The Spine
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A quick glimpse inside
Photo Sharing - Video Sharing - Photo Printing - Photo Books
Photo Sharing - Video Sharing - Photo Printing - Photo Books
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It is literally my whole blog, all of my yipping, turned into the most magnificent book.
Amy and Kristen we love it. Thank you.
12 Aug 2008
Naples, again
We have just got back from another fun filled trip to Naples. Maybe we should move over there considering how many times a year we go and how much we love it there. Some things about the place make my brain itch but for the most part it is really lovely. One thing that we really love and the main reason we go is for the beach. The beaches there are fabulous and there aren't ever that many people on them. Here you barely have enough room to put down your towel without hitting the towel of the person next to you.
We took the kidlets down to the beach after dinner the first night we arrived with the intention of going for a walk. Hmmm, kidlets cannot just walk on a beach they need to be in the water, well ours do at least. So they stripped off their dresses and dove in.
I love these photos of the girls.
Rosie running along the pier,trying to catch up with Lily.
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In the water
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My favourite photo. Rosie Posie loves the ocean.
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My other bathing beauty.
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After an evening on the beach the girls required an ice cream. Of course it was Lily that decided it was a requirement and Rose just goes along with whatever Lily says cos she would follow her to the moon.
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This one is a little bit blurred cos I was ever so close to her but you can still see her happy little ice creamy face.
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Jacob took this one cos he found it to be hilarious that the rubbish bins were made by "Dawn". He is getting much to much mileage from this!
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More fun planned for the next few days cos we want summer to end with a bang. School starts on Monday and then Andie arrives for a week and we can't wait.
We took the kidlets down to the beach after dinner the first night we arrived with the intention of going for a walk. Hmmm, kidlets cannot just walk on a beach they need to be in the water, well ours do at least. So they stripped off their dresses and dove in.
I love these photos of the girls.
Rosie running along the pier,trying to catch up with Lily.
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In the water
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My favourite photo. Rosie Posie loves the ocean.
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My other bathing beauty.
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After an evening on the beach the girls required an ice cream. Of course it was Lily that decided it was a requirement and Rose just goes along with whatever Lily says cos she would follow her to the moon.
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This one is a little bit blurred cos I was ever so close to her but you can still see her happy little ice creamy face.
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Jacob took this one cos he found it to be hilarious that the rubbish bins were made by "Dawn". He is getting much to much mileage from this!
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More fun planned for the next few days cos we want summer to end with a bang. School starts on Monday and then Andie arrives for a week and we can't wait.
9 Aug 2008
Let The Games Begin
Did you see the opening ceremony for the Olympics last night? It was just amazing, thoroughly amazing. I sat on the couch mesmerised. I still can't believe that they managed to pull it off because when we were there at the end of February the Olympic village was no where near finished. The Birds Nest was complete but some of the other stadiums were not and for miles around it was a huge construction site.
I have never had such an interest in the Olympics in my life. It is funny because all of a sudden my whole family is rooting for China. Up until this point we have always had world war three during the games because I always root for England and Jacob always roots for the US. It is hard rooting for a country than than the one you are in because the broadcasters never give the others the time of day. Shouts of "CHINA, CHINA" fill the air here and it is great fun. Even Lily is filled with the spirit. Whilst we were there we bought all of the mascots and each has a different name and together they say, Beijing welcomes you, rather cool stuff.
I just hope that everyone behaves themselves and no political wars break out. Too many babies are still waiting for their families and in order for that to happen we need to see smoothe sailing.
GO CHINA.
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