In Our Daughter's Eyes - Emily's Wish Trip Dec.10-Jan.11 ALL DONE PICS ADDED p.16!

[Emilyswish]

Well, the neurology appointments weren't quite what I was hoping. She has lost some weight and her spasms (seizures) have increased a bit since we had our trip.

They will probably need to adjust her keto diet a bit to add calories, but they can't decrease her carbohydrates because of her hypoglycemia and they can't decrease her protein because of low albumin levels.

We have to do a fasting blood test on Friday (she can only handle about 3 1/2 hours of fasting) and then they'll decide how to asdjust the diet (how we make the formula). Also her EEG showed some hypsarrhythmia which was the worst news. It's the chaotic waves in her brain that causes it not to be able function properly. Before the diet, she had "hyps" through the whole EEG, but after starting the diet, it went away. She's been on the diet for over 2 years now and they saw about 2 minutes of it at the beginning of the EEG this time.

The good news is, she is still doing well, and actually making some progress with her skills so her doc said she's encouraged by that, and she'd be more apt to do something right away if she was regressing at all or losing skills, sleeping more at school, etc. But we may need to add a another drug soon.

Just not what I was hoping.

I'll try to finish day 5 soon. Thanks again for thinking of us!

 

[fulseasmama]

I am so sorry the Neurology appointment did not go as you had hoped it would. I am sure every doctors appointment comes with some stress and worry...I hope they are able to make the changes they need to for your sweet princess Emily.

Thanks for the recent updates to your TR...love reading them and love seeing the Scooby pictures so awesome!

Take care, I'll be thinking of your family as always.

 

[KatMark]

I'm sorry the appointment wasn't what you were all hoping for. I hope they can fix Emily's meds and that she starts doing a little better soon. Sending you a in the meantime.

 

[that's nice]

I'm sorry the appointment wasn't filled with good news. We will be keeping Em and you guys in our prayers.

 

[Emilyswish]

I am so sorry the Neurology appointment did not go as you had hoped it would. I am sure every doctors appointment comes with some stress and worry...I hope they are able to make the changes they need to for your sweet princess Emily.

Thanks for the recent updates to your TR...love reading them and love seeing the Scooby pictures so awesome!

Take care, I'll be thinking of your family as always.

Thanks!

I'm sorry the appointment wasn't what you were all hoping for. I hope they can fix Emily's meds and that she starts doing a little better soon. Sending you a in the meantime.

It's odd, because really, she is doing pretty well on the outside!

I'm sorry the appointment wasn't filled with good news. We will be keeping Em and you guys in our prayers.

Thanks Tim!

I have a few minutes, so I'm going to try to get a little update in!

 

[Emilyswish]

DH went off to Urgent Care to get Drew and Carter checked out for suspected ear infections.

I took the girls to get their nails done at the My Little Pony La Ti Da Spa!! Brenna LOVES MLP so she was super excited to see this!

And she also loves to get her nails done! I usually only do Em's toes because she sucks on her fingers a lot. But it was her trip afterall, so she was definitely getting a manicure this time!

Brenna being pampered

Em's nails

Since we were already at the castle, I decided to let the girls do their pillows. I did feel really bad later when DH came back because he had really wanted me to wait for him and the boys. Sorry babe!
For some reason, I don't have a pic of Brenna's kitty cat pillow.

We went to check out Amberville train station for a bit -

and then had some ice cream! The boys came back while we we were eating. They hadn't even seen the doctor yet! They were told to go home and come back!!!

So DH had a banana split - (I think his tummy was starting to feel a little better this day! )
One of my fave pics of the whole trip!

 

[scouthawkk]

Ooooo, spa day for the little princesses, what fun! Did the boys ever get to be seen by a doctor somewhere?

Jen

 

[KatMark]

Love the spa day pictures, and DH looks mighty happy with that banana split.

 

[Emilyswish]

Ooooo, spa day for the little princesses, what fun! Did the boys ever get to be seen by a doctor somewhere?

Jen

Yes, sorry to leave you hanging in worry! They told them to come back at 1:30. So they do get to see the doctor!

Still more to come on Day 5 which was also New Year's Eve and the Pirates and Princesses party at GKTW too!

 

[petals]

luvin the pampering pics

 

[mareemouse]

You have a lovely family !!

 

[Emilyswish]

luvin the pampering pics

I loved taking them to get pampered!

You have a lovely family !!

Thanks so much! And thanks for reading!

 

[Emilyswish]

So after a little ice cream for lunch, the boys went back to see the doctor, and the girls and I went back to the villa for a rest. It's been so long now, I'm not sure what we did - it was either Brenna and I watched a movie while Em napped, or all 3 of us napped.

Either way, the boys returned with 3 prescriptions, one for nausea for Daddy, and two for ear infections.

Then we were ready to do some more exploring in the Village. It was really nice to have a day to just be at the village. We did have to give up a day at a park to do it but it was really necessary with the sicknesses.

It's important to note here that Emily was vomit free so far this day!! Things were definitely looking up!

Back together again, all 6 of us headed over to the Castle of Miracles to make Emily's star. This was really hard. I had to make it for her, and just like everything else, I just wish so much she could do it herself!

She did hold it.

The star fairy was "on vacation", so we just put the finished star in the box which I was a little bummed about.

Then the boys got their pillows from the pillow tree.

Drew's pillow put him right to sleep!

Next stop: Amberville Train Station - We knew Carter would be super excited about the trains!

A quick boat ride

And then the trains!

Carter was so excited by the trains and all the moving parts and buttons, he hit his head on the plexiglass several times leaning forward to see it all!

We had gotten passes to use for the prize machine, so everyone took their turn with that.

 

[Emilyswish]

We tried the remote control boats which weren't working so well, or we were just really bad at it!!

Then we went out back to get a ride on the train!!!

They saw this helicopter first -

Then Carter, Brenna and Drew piled in the engine car and we got in the accessible car (YAY!!) with Em.

We went to the game room in the back and played some of the arcade games. We considered playing mini golf, but Em was getting fussy and it was about time for dinner. Gee-off didn’t really want to eat, so he brought her back to the villa and relaxed while I took Drew, Carter, and Brenna to dinner at the Gingerbread house.

After that we went back to the villa to get dolled up for the Pirates and Princesses party!!

As soon as we walked in, Brenna found the make-up table and got some eye shadow, blush, and lip gloss. She was in heaven!!

Drew got some pirate facial hair (Carter's not into the face paint so much!)

Mayor Clayton and Miss Merry arrived early on and Brenna was excited to see they had matching dresses!

Then Shamu and his dolphin friend arrived!

We never made it to SeaWorld, but at least they got to meet Shamu!

There was dancing

And bubbles!

The kids were called up onto the ship to receive their princess crowns and pirate swords -
I really tried to get all 4 of them in one pic while they were waiting

My princesses

Brenna really liked this guy

continued . . .

 

[Emilyswish]

One of my pirates!

Then they started passing out New Year's favors!
Carter was so thrilled with this light stick!

Em liked it too!

Party hats

And the sparkling cider! It was pretty late for our crew, almost 9pm. And they were starting to get loopy - Carter in particular. He was REALLY enjoying the cider!!

Bottoms up!

And down he goes!

We knew it was time to get back to the villa after that! They had a countdown and a ball drop on the ship at 9pm and then we called it a night! Such a great day!

Now I know I have some video from the party, so I'll be posting that next . . .

 

[mysevendwarfs]

I love the photo of your two princesses...perfect! You have a beautiful family. Thanks for posting so many pics of GKTW. It looks like so much fun. I will keep Emily in my prayers.

 

[KatMark]

Wonderful update, Aimee. Your are beautiful and your are

Sorry about the ear infections, but it looks as if everyone had a great time at the Princess and Pirate party.

 

[fulseasmama]

Love your updates. The pictures from the pirates and princess party are great. Looks like all the kids had a great time. Fuller and Chelsea loved that party too! Hope all is well with your beautiful family.

 

[petals]

luvin the update.

 

[smileycrissy]

Ok Carter's pic of chugging down the cider was too cute!!! Love the photo of Em and Brenna together. And I think its so adorable that Brenna gets into her 'princess pose' for photos. I'm glad to hear that everyone seemed to be feeling better that night.