Happy New Year 2011! Emily's MAW/GKTW Trip - The Final Gives!

[my2ms0205]

Hi Aimee! Don't know if you remember me from Scrappin n' Stuff, but I just had to tell you how excited I am for you guys! You are going to have so much fun.


~Cindy

 

[Emilyswish]

Hi Aimee! Don't know if you remember me from Scrappin n' Stuff, but I just had to tell you how excited I am for you guys! You are going to have so much fun.


~Cindy

Of course!! Hi Cindy! Looks like we'll be there shortly after you! How funny to bump into you here. Thanks for commenting.

 

[Dreamer & Wisher]

But then they won't be FREE!!!!! Everything is so much more expensive in 3s isn't it?




Phooey! I thought I saw that it was closed the other night. Can we see Ariel anywhere else?

Usually she is one of the princesses you see at Akershus.

Heavens yes it is! But triple the blessings too! I had not thoguht about them not being free though ugh lol.

You could go shortly before they turn 3 or go the week of their birthdays then they will be a little bit older, but free.

 

[Emilyswish]

Nancy, that would be great if she was at Akershus! I'll keep my fingers crossed.


I was just readingTyler's Dream Factory trip report (took me all night!) and now I have a few more things to add to my list of things to see!!! I already have too many things but now i have to add:

Star Wars Jedi training for Drew - I know it's Emily's trip but it make his LIFE if he got to fight Darth Vader, OMG!

Try to meet Marie in France at Epcot for Brenna, she just loves "kitties" and calls any and all kitties, "My kitties!"

And Meet Thumper at Animal Kingdom - that's for me!!! Oh my gosh, I just let the kids watch Bambi the other day and they made it about half way through, but gosh I just LOVE that bunny, he is soooooo stinkin' cute! I guess he doesn't make a lot of appearances, but I hope he's around while we're there!

Also, I might look into the Pirate League for the boys, that was really cool, though expensive. Ahhh, too much to do, not enough time! I know, I know, relax and enjoy it!

 

[Emilyswish]

When you purchase the photos or CDs do you add the borders and graphics yourself, or do they do that for you already?


There's probably an info thread about that around here somewhere I'll bet . . .

 

[that's nice]

When you purchase the photos or CDs do you add the borders and graphics yourself, or do they do that for you already?


There's probably an info thread about that around here somewhere I'll bet . . .

You get to add all the different boarders. But in certain locations you can ask for the PP photographer to add a Tinkerbell (Main St MK) a Simba (in front of the tree of life AK) Stitch (DHS) etc...

Something like this:

 

[Emilyswish]

Thanks for the quick reply, she is too cute!!

 

[that's nice]

Thanks for the quick reply, she is too cute!!

Thanks!!!


I forgot to add. When editing your pictures, make sure you edit them for 4x6 pictures as well as 5x7. Once you get the CD and you print a picture without editing it for 4x6 you will cut off some of the boarders. It is a pain, but that is how Disney does it.

 

[Emilyswish]

I just had to post that I got the cutest shirts yesterday for my girls. They say "Make a Wish" - too perfect! I'm sure they were meant to be like a wish for the holidays type of shirt but I couldn't resist.

 

[billwendy]

When we were there in april - each MAW kiddo got a free Disney photopass CD!!!! hopefully that is still the case!! Make sure you really use your photo pass!!!

 

[ms_mckenna]

You could go shortly before they turn 3 or go the week of their birthdays then they will be a little bit older, but free.

Ah but my "triplets" are special made by adoption triplets and have 3 different bdays lol. We do things difficult around this house.

I was thinking that Wendy but I was not sure. I agree that you should use photopass every time you can

 

[Emilyswish]

That would be amazing if we got the photopass cd for free!

 

[Emilyswish]

45 DAYS!!!!!!​

I'm just wondering how I'm going to get any chore/errands done around this house between now and the day we leave now that I'm addicted to the DIS!!??!!??

 

[that's nice]

45 DAYS!!!!!!​

I'm just wondering how I'm going to get any chore/errands done around this house between now and the day we leave now that I'm addicted to the DIS!!??!!??

LOL Good luck with that!


I'm sure your 45 days will fly by with the holidays coming.

 

[Emilyswish]

Emily was born with her triplet sister and brother in August of 2007 at almost 34 weeks. She was baby "C", the last one out.

Here she is with me in the NICU

At birth we did not know that Emily had a chromosome disorder (we had actually had testing done that told us her chromosomes were normal during the pregnancy). We were well aware that any of the babies could have issues arrive due to being premature, but 34 weeks for triplets is actually above average so we were hopeful.

When they started eating by mouth, Emily seemed to have the most trouble, and once, when I was nursing her, she turned blue and almost stopped breathing!! So scary. The doctors had also noticed some of her facial features were abnormal like low set, tipped back ears and extra creases on her eyelids that might indicate Down Syndrome. So we did another test and it showed she did not have Down Syndrome.

Carter and Brenna each came home after 2-2 1/2 weeks but Emily ended up having to stay in the NICU for 5 extra weeks to continue to figure out eating. But, she did and got to come home in early October!

Drew showing off his babies - Emily is in the middle

Things were going pretty well at home for Emily though we were noticing that she took longer to eat, slept more than the other babies, and didn't seem to be very interested in toys. But these things didn't really concern us too much.

However, we were concerned about her head shape - it was very flat on one side and in the back, so we were referred to see the head/facial plastic surgeon at our Children's Hospital (in Philly) just to make sure her skull bones didn't fuse prematurely, hindering brain growth. They had not, but he was concerned about her upon seeing her, as he noticed some of the same features the NICU docs did. He had the geneticist come see us right there in his office. She explained to us that she also recognized these features and would recommend a more in depth test (who knew there was one?? It's called the FISH) to check for any chromosome deletions or duplications or other rarer syndromes, possibly Noonan's syndrome. So we had blood drawn, but the results would take 1-2 MONTHS!!!!

After a few weeks Emily started having these episodes of jerking and screaming/crying, most notably during or after eating, but they often occurred any time day/night. So after getting reflux meds changed in 3 different visits to the pedi, we went to a local ER and they too said it was reflux and adjusted her meds. These jerking, gagging "reflux" episodes just continued to get worse so we were referred to a GI at CHOP (the children's hospital). Our appointment was scheduled for 12/27/08. (Just got a tear in my eye as I realized that is the day we will be flying to Florida for her wish trip - two years exactly!)

We had our first Christmas with the babies - I'm looking a Em yawning on the right.

At our appt the GI doc was concerned. We had taken a video of the episodes because she conveniently never had them during doc appts, and he said it didn't look like reflux to him at all but probably seizures (which we were beginning to suspect). Then he noticed that she seemd lethargic and not as responsive as she should've been. She had also been constipated and had a slight fever that day. He suggested she might have botulism and gave me a specimen cup and lab slip and sent us off.

Well, I sat in the car and cried. He just told me that she was most likely having seizures and that she could have botulism and I should go home??? So I drove over to CHOP ER and the rest is a crazy mess of awful diagnoses and treatments and hospital stays.

They told me within hours that she was having seizures, infantile spasms to be exact. The fever was from a mild UTI. She did not have botulism!The next day she had an MRI (normal!) but because she had been having feeding and developmental delays before the spasms started that most likely this would mean a poor outcome for her and some type of mental retardation on a scale anywhere from mild to severe. During her MRI, the geneticist came and found me. The results had come back (it was almost exactly 1 month later) and they had a diagnosis. Emily has an unbalanced translocation of chromosomes 7 and 9. This is not just one disorder, but two. She has a duplication on 7 and a deletion on 9. The outlook for this is poor as well, but there is little to no data because it is that rare, there is no syndrome name, support group, research etc.

 

[Emilyswish]

I'll try to be a bit more concise this time as that was a novel!

She spent her first New Year's Eve in the hospital.

January 08 - started treatment for IS (infantile spasms) with an injectable I had to give her at home. It is a steroid and made her face puff up big time. But the first round did work! The spasms stopped and she finished the course of ACTH.

February 08 - The IS came back (you knew that was coming, didn't you?). We treated with another round of ACTh. This time, though it was stopping the spasms again it caused her to have steroid induced diabetes!! We had to stop treatment and she was readmitted to treat the diabetes. The diabetes did go away once the ACTH was out of her system. Started treating the IS with Topamax.

March 08 - Emily suddenly stops eating by mouth; refusing, choking, letting it spill out. We can't get more than 1 oz. in her. She had been eating 8 - 6oz bottles a day plus had started eating oatmeal and baby food fruit. Go to the ER to treat for dehydration but she's not dehydrated, doc thinks she'll just eat again soon and sends us home. As we are signing discharge papers, they come in and say, she's not leaving, she's heading straight to the PICU for sky high calcium levels in her bloodwork! Admitted for hypercalcemia - treated with a shot never before given to a child, but it worked along with switching to a low calcium formula. They still can't figure out why her calcium was so high. She never did start eating by mouth again and went home with an NG tube.

April 08 - Treated with Topamax and Keppra for IS. Gets a molding helmet for those flat spots. Diagnosed with "real" reflux and laryngomalacia (narrowing of her airway).

June 08 - We decide to trade the ng for a gtube and it becomes the scariest day of my life in which she "codes" after the surgery. You can read my blog post about that here.

August 08 - The babies turn 1!! Here's a montage of their first year.

September-December 08- Emily gets her Kidkart. She starts having low blood sugars. She tries several medications to control the IS.

January 09 - Start the ketogenic diet. Weeklong admission to learn how to follow all the rules of the diet! Discharged and quickly readmitted with a GI bug.

March 09 - Admitted due to another stomach bug, but the seizures seem to be responding to the diet.

April 08 - Starts eating a tiny bit by mouth again. Has been seizure free for almost two months! We get approved for a program that will provide Emily nursing care in our home 5 days a week. Things are looking up!

May 09- Til NOW:
Emily continues on the diet, we have periods of seizure freedom but then some breakthrough clusters too. She is making progress in all areas of her development, other than eating by mouth, though very slow progress. She still has nurses at home and started school in September of this year.

Our Eagles fans - Em's shirt says Eagles cheerleader in training!

And if you read all that, you get a gold star!

 

[ellenbenny]

Thank you for sharing your story, your children are beautiful and I hope you all have an amazing wish trip!

 

[billwendy]

LOVE your pictures!!!!

 

[Emilyswish]

Thank you for sharing your story, your children are beautiful and I hope you all have an amazing wish trip!

Thanks ellenbenny

LOVE your pictures!!!!

I did promise lots of pics!

 

[ms_mckenna]

Wow you guys have been through so much thank you for sharing your story with us. Emily has such a great smile her whole face lights up Great pictures!