Day 6
We are in the middle of Addies birthday party/new years eve party along with 70000 others. The park was shut down to any other entrants by 10 a m.
This place is unreal! What a beautiful day and night!!!
Happy birthday to my sweet baby and happy new year to you all!
How a diagnosis of Microcephaly changed the lives of so many people.
From Africa to Germany
Day 5
Today was awesome.
We opened up Animal Kingdom and shut down Epcot. Julien and Addie hung in until the very last minute. We saw lions in Africa, had bier in Germany, ate lunch in the rain forest, watched amazing fireworks and went back to prehistoric times. Addie danced and Julien tried new rides.
In four hours we start it all again.
Today was awesome.
We opened up Animal Kingdom and shut down Epcot. Julien and Addie hung in until the very last minute. We saw lions in Africa, had bier in Germany, ate lunch in the rain forest, watched amazing fireworks and went back to prehistoric times. Addie danced and Julien tried new rides.
In four hours we start it all again.
Fish, cat and dog
Day 4
Today was awesome - minus the fungus!
Fungus girl is still full of goop and is leaving a trail of it around Orlando. Ugh.
The pain meds must have worked wonders because Addie's mood was fabulous today! We spent most of today in Seuss Land and with the exception of the possessed Merry Go Round, it was wonderful! Julien insisted on taking Addie on the Merry Go Round and I think her equilibrium was so disturbed, it was awful and the ride couldn't end quickly enough. On the other hand, Addie couldn't get enough of the atmosphere, The Cat in the Hat and the fish (red fish, blue fish...) rides were her very favorite - it was so beautiful to see her joy!
For the majority of the day, Addie didn't say anything, until she decided that she was addicted to the fish ride and then we heard, "fish". We love hearing new words!!!!
On the way out of the park tonight, Addie spotted a dog (assisting his owner) in the midst of hundreds of people and she looked back at me, pointed and looked back at me like she was confused. She just didn't understand why out of nowhere there was a dog walking around. It was sweet to see her thinking through a situation.
Julien was the best big brother today wanting to take Addie on all the rides, pick out toys for her and to keep her entertained at all times. I love watching them together!!!!
Today was awesome - minus the fungus!
Fungus girl is still full of goop and is leaving a trail of it around Orlando. Ugh.
The pain meds must have worked wonders because Addie's mood was fabulous today! We spent most of today in Seuss Land and with the exception of the possessed Merry Go Round, it was wonderful! Julien insisted on taking Addie on the Merry Go Round and I think her equilibrium was so disturbed, it was awful and the ride couldn't end quickly enough. On the other hand, Addie couldn't get enough of the atmosphere, The Cat in the Hat and the fish (red fish, blue fish...) rides were her very favorite - it was so beautiful to see her joy!
For the majority of the day, Addie didn't say anything, until she decided that she was addicted to the fish ride and then we heard, "fish". We love hearing new words!!!!
On the way out of the park tonight, Addie spotted a dog (assisting his owner) in the midst of hundreds of people and she looked back at me, pointed and looked back at me like she was confused. She just didn't understand why out of nowhere there was a dog walking around. It was sweet to see her thinking through a situation.
Julien was the best big brother today wanting to take Addie on all the rides, pick out toys for her and to keep her entertained at all times. I love watching them together!!!!
Fungusy parades
Day 3
Today was better than yesterday - no meltdowns, but lots of fungus. It was a busy, non-stop day full of activity, rides and a parade that caused my youngest child to go from joy (bears) to terror (clown) to joy (ducks).
Julien is enjoying taking in all the neat details and is looking forward to each new ride or activity.
Fungus girl, is still...very fungusy.
Today was better than yesterday - no meltdowns, but lots of fungus. It was a busy, non-stop day full of activity, rides and a parade that caused my youngest child to go from joy (bears) to terror (clown) to joy (ducks).
Julien is enjoying taking in all the neat details and is looking forward to each new ride or activity.
Fungus girl, is still...very fungusy.
32 Degrees, but feels like -12
Day 2
Well...F.G.'s sinuses have taken a turn for the worse. We were not out today for very long before F.G. hit the meltdown of no return. Chris and I decided to take her back to the condo and my family offered to watch her so that we could go back out to the park. We made a trip to Publix to load up on meds, I got Addie all settled in a warm pair of pajamas, with a good dose of Tylenol and with two new matchbox cars (she loves pushing cars around and making little car sounds). After a few hours and lots of loving, Addie was content and happy to play with my niece, we met back up with the rest of my family so that we could spend time with Julien.
Although the weather is literally freezing cold, we stayed until the park was ready to close and although I have never seen any of the Harry Potter movies, it was a must for us to check out the castle and rides. Wow..it was so impressive and awesome! A must for anyone visiting Universal Studios.
The day really was nice, I just wish F.G. was all beter...this is so awful for her. I almost cried right along with her today, it was just that heartbreaking. She has to get better soon.
On our way out of the park tonight, we passed Bubba Gump's and right in the window was the sweatshirt that read, "Run Forrest Run".
Well...F.G.'s sinuses have taken a turn for the worse. We were not out today for very long before F.G. hit the meltdown of no return. Chris and I decided to take her back to the condo and my family offered to watch her so that we could go back out to the park. We made a trip to Publix to load up on meds, I got Addie all settled in a warm pair of pajamas, with a good dose of Tylenol and with two new matchbox cars (she loves pushing cars around and making little car sounds). After a few hours and lots of loving, Addie was content and happy to play with my niece, we met back up with the rest of my family so that we could spend time with Julien.
Although the weather is literally freezing cold, we stayed until the park was ready to close and although I have never seen any of the Harry Potter movies, it was a must for us to check out the castle and rides. Wow..it was so impressive and awesome! A must for anyone visiting Universal Studios.
The day really was nice, I just wish F.G. was all beter...this is so awful for her. I almost cried right along with her today, it was just that heartbreaking. She has to get better soon.
On our way out of the park tonight, we passed Bubba Gump's and right in the window was the sweatshirt that read, "Run Forrest Run".
Beautiful even when sick - second year in a row
Just like last year, Chunkus Monkus was sick on Christmas - battling these awful sinus and ear infections.
This year, I was up before dawn.
I got ready for the day, made the coffee, cooked the breakfast casserole, washed clothes, cleaned up and took care of the kitties...all while everyone slept.
At 8:15, I finally couldn't take it any longer and I had to wake everyone up!
Addie wasn't thrilled about getting out of (my) bed, but when I told her that Julien was waiting for her, she was all smiles!
We made it!
Day 1
I actually am able to sit down for a few minutes, time for a little update.
The trip was incredibly long, but we made it in just over 10 hours!
Addie is very miserable with her ear, but no fever in sight today!
Once again, we have impeccable timing! We decide to head out of town and it snows! It rarely snows in Alabama and we missed most of it. When we left the house, it was cold, windy and sleeting, but no white fluff. After we were officially out of the state, all the beautiful snow came down and stuck....and we missed it.
The trip, thankfully, was without incident. We saw a beautiful, huge buck by the side of the road not long after we left, then we saw a car that had overturned on some railroad tracks, then a bird ran right into the corner of the front of the car (we hate for any animal to kill itself on our car), my brother has an amazing heart of gold and bought some cat food for one little kitty that we saw at a convenience store -poor kitty was so cold, we stopped about five times in all, Addie cried off and on and none of us got any sleep...but we made it here. Our home for the next week is awesome - I did good! The kids (not F.G.) have already taken a swim in the outdoor heated pool - it is freezing here! We are just relaxing and trying to recuperate from the long drive and will start our day fresh tomorrow.
My brother tried his best to make me flip out on him when at one of the lovely convenience stores, he asked me - as I was getting out of the car - "so...I thought you were going to put make-up on.". Leave it up to the men in my life to make me feel worthy of their company...there's a "Julien" story coming later in the Christmas Day photos.
Thank you all so much for your prayers! Addie did better than we were afraid she would, but I am truly hopeful that the trip home will be easier on Addie. We are so thankful for this time together and we are so thankful for your prayers and support!
I actually am able to sit down for a few minutes, time for a little update.
The trip was incredibly long, but we made it in just over 10 hours!
Addie is very miserable with her ear, but no fever in sight today!
Once again, we have impeccable timing! We decide to head out of town and it snows! It rarely snows in Alabama and we missed most of it. When we left the house, it was cold, windy and sleeting, but no white fluff. After we were officially out of the state, all the beautiful snow came down and stuck....and we missed it.
The trip, thankfully, was without incident. We saw a beautiful, huge buck by the side of the road not long after we left, then we saw a car that had overturned on some railroad tracks, then a bird ran right into the corner of the front of the car (we hate for any animal to kill itself on our car), my brother has an amazing heart of gold and bought some cat food for one little kitty that we saw at a convenience store -poor kitty was so cold, we stopped about five times in all, Addie cried off and on and none of us got any sleep...but we made it here. Our home for the next week is awesome - I did good! The kids (not F.G.) have already taken a swim in the outdoor heated pool - it is freezing here! We are just relaxing and trying to recuperate from the long drive and will start our day fresh tomorrow.
My brother tried his best to make me flip out on him when at one of the lovely convenience stores, he asked me - as I was getting out of the car - "so...I thought you were going to put make-up on.". Leave it up to the men in my life to make me feel worthy of their company...there's a "Julien" story coming later in the Christmas Day photos.
Thank you all so much for your prayers! Addie did better than we were afraid she would, but I am truly hopeful that the trip home will be easier on Addie. We are so thankful for this time together and we are so thankful for your prayers and support!
In Case You Were Wondering...
If Addie is doing any better...here's the answer for you (if you can't tell...that's goop oozing out of her ear...makes for a real nice photo...):
We are taking this week at our own pace. I was so hoping that Addie would be all better before Christmas, but it just didn't turn out that way.
When we return, I will have pictures from Christmas Day, Addie's Birthday and our week under the palm trees...it will probably take an entire month to catch up!
If you all don't mind, please say a prayer for us to have a safe trip and please pray for Addie's comfort and contentment in the car.
Merry Christmas to you all!
Run Forrest Run!
It has been an amazingly difficult and awful year.
As thankful as I am for all of the blessings in my life, this is one of those years that I don't ever wish to repeat.
Every aspect of our lives has been impacted in very difficult ways and we are more than ready to move on to a better year in 2011.
On many occasions, I would have loved nothing more than to pack up and run away with my family.
There were many nights that Forrest Gump would pass through my thoughts and all I could think, was "Run Forrest Run!".
Since I am supposed to be this strong person, I stayed put and we continued on.
However, I made the executive decision that we had to have a change of scenery due to two very difficult dates this week - the one year anniversary of my nephews deaths and Addie's Birthday.
When my family came over for the Christmas Eve party, we started out the evening with a party game and when it was over, we announced where we would be going...
which made everyone very, very happy!
We have been asked by several people what our plans are this year for Addie's Birthday.
At this very moment, I have no plans other than to make it a very special day for her.
We are going to take the day as it comes and let my sweet baby enjoy the day.
No stress, no pressure to entertain, just us...together.
Christmas Eve at Home!
You just have to keep it balanced!
My best friend Amy stopped by to bring Julien and Addie their presents.
Tonight
I read The Mouse Before Christmas to my children as they lay together beside me in a warm bed.
I tucked each one of them in for the night.
I kissed each one.
I told each one how much I love them.
As I stepped into the hallway, I thought of all of you.
I thought of my family, friends and acquaintances who are spending tonight in hospitals with their children or laying awake listening for the sound of an alert from a monitor or grieving over not having your children to hold.
I thought of all of you and I prayed for you.
In my time of grief and pain, I always remember how you are grieving for your own children - in whatever way that may be.
Wherever you are and whatever circumstances you are facing, may tonight be a night of peace and comfort for you.
We'll try anything...
Once.
An anonymous comment referred me to a website for Baby Elephant Ears - a pillow designed specifically for car seats.
Considering how agonizing our car rides can be, we thought we would pursue the tip.
A BIG "THANK YOU" to Aunt Nonna for giving this to Addie for an early birthday present (and thank you to the anonymous tip).
It will definitely be put to the test this week!
A Quiet Afternoon
It appears that Addie's sinuses are taking a turn for the worse.
While I was getting everything ready to start making treats for tonight, Addie was content to visit with the snowmen on the sun porch and give them lots of lovings!
When I started making the treats, she was happy to stand and help me and supervise her Daddy as he helped out by vacuuming the house.
When I started making the treats, she was happy to stand and help me and supervise her Daddy as he helped out by vacuuming the house.
We are getting ready to kick off one amazing week!
She's in Trouble!
Addie has been off the hook today.
This child has completely worn me out and this was one of those rare nights when Addie's bedtime couldn't get here fast enough!
I suppose Addie was thrilled over having clean - temporarily fungus free - sheets or maybe it was the Five Little Monkey's book that was stuck in her head...either way, as soon as I made her bed and turned to put away some clothes, this little Monkey started "jumping" on the bed!
I Have Complete Faith...
In our ENT.
I seriously do not know what I would do without him.
When I picked up the telephone Tuesday afternoon in a bit of an irritated panic, I was more than relieved to find out that we could get in to see him on Wednesday.
Wednesday was an unbelievable day.
I am still trying desperately to recuperate from a horrendous virus, work is so overwhelming (I'm not complaining, I'm not complaining, I love my job and want to keep my job), Addie is miserable and we are trying to get a million things done before Christmas.
To top that off, Chris and I have impeccable timing.
We managed to find ourselves right in front of the Channel 13 news camera...luckily, I managed to slither out of the view of the camera, whereas my husband did not (if you don't know the story, I am not sharing it here on the blog).
It was a day of pure ridiculousness.
After lots of TLC and attention from our ENT and his staff, it was nice to know that apparently F.G. has a beautiful ear infection that just wants to stay put and make our lives miserable.
Unlike a "typical" child with a "typical" or "common" ear infection, Addie has a much, much harder time with the infections and she cannot be treated as if she has just a "common" ear infection.
We are currently waiting on another test to come back just to see if there is anything special that needs to be done.
If our current method of treatment doesn't work for F.G., our only option might be a trip to the operating room to clean out the infection.
We have to go for a follow-up early January and we will find out then if any progress has been made.
It wouldn't be Christmas without my little fungicidal maniac and her ear and sinus issues.
Sweet Little Words!
My sweet baby girl loves to look at all of the Christmas lights this year and I was thrilled to get her sweet little voice on video!
We have come such a long way in the past year!
Not a Speck of Pink to be Seen!
It was that time of year again!
I was on the hunt for the perfect little hat for Addie and after an exhaustive search on Etsy, I found a seller who was willing to make a special little hat and matching mittens just for Addie.
Addie Mae Mae - Part 2
I really do hate to subject you guys to this, but it has to be done for our archives.
I fully realize that the screechy sound of my voice will want to make you run and poke your eardrums out, but still...this blog is used as a way to chronicle Addie's life - even the annoying Mom parts.
I just found this video and it goes along with the original Addie Mae Mae post.
I just found this video and it goes along with the original Addie Mae Mae post.
(Don't forget, in order to fully punish your eardrums, you can pause the music located at the very bottom of the blog.
For the record, I really don't think my voice is that annoying in real life.)
(and..when I asked Addie, "where are you", it was because she kept trying to see around to the front of the phone...not because I really didn't know where my child was.)
(and..when I asked Addie, "where are you", it was because she kept trying to see around to the front of the phone...not because I really didn't know where my child was.)
My Little "Helper"
Progress
Addie requires assistance in all areas and in all aspects of her daily life.
We definitely are seeing improvement and she continues to work hard every day!
One area that we have noticed improvement is in her hand washing skills.
Although Addie requires help with hand washing, she is doing better than she was at the beginning of the school year.
Addie has to have someone stand with her while she washes her hands.
She needs someone with her to help her with her balance, getting the soap for her hands and helping her through each step of the process. However, Addie has learned how to get down the steps without physical assistance.
Someone has to be standing with her to help her if she needs it or to catch her if she loses her balance, but other than that, she has learned how to hold onto the sink and step down.
After she makes it to the bottom, she will finish wiping her hands, then she will throw the paper towel into the trash.
It may seem like trivial progress to some, but it is huge progress in our little world and we are so proud of her and so thankful for the hard work and dedication from Addie's teachers and therapists!
After she makes it to the bottom, she will finish wiping her hands, then she will throw the paper towel into the trash.
It may seem like trivial progress to some, but it is huge progress in our little world and we are so proud of her and so thankful for the hard work and dedication from Addie's teachers and therapists!
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