Trip Report *COMPLETED* When We're Together - December 2021

"Sure it's nice to open a gift that's tied up with a perfect bow. But the greatest present of all was given to me long ago. It's something I would never trade, it's the family that we've made. 'Cause when we're together, I have everything on my list. And when we're together, I have all I've wished. All around the Christmas tree, there'll be dreams coming true. But when we're together, then my favorite gift is you."

"When We're Together" has held a special place in my heart since the first time I watched "Olaf's Frozen Adventure." It is even more special now that we have the gift that we prayed and wished for, for so long. I am so beyond thrilled to be preparing to take our son on his very first Disney trip, and I can't wait to take you all along with us!

Who: By this point, many of you know me (Katie) and my hubby Jason

And now we have a little sidekick, our son Lincoln! He will be six months old on this trip.

We will also be meeting up with some of my extended family while we're down there! My "Disney Aunt and Uncle" - they are FL residents and DVC owners; their son (my cousin) and his wife, and their son who is 8 months older than Lincoln. Not sure if I'll be posting any pics of the family on here, but you'll here about them I'm sure, so we'll call them Aunt D, Uncle B, C (my cousin), E (his wife), and CT (their son).

When: Saturday, December 11th - Thursday, December 16th! We normally do our holiday trip the week after Thanksgiving, but we postponed it this year so that we could meet up with the fam while they're down there.

Where: Pop Century! Remember when I said that I didn't think Pop was worth the extra money over an All Star Resort?

We did enjoy the Skyliner for getting to/from HS and Epcot, although I don't know that it's really worth the price jump from the All Stars to Pop.

Yeah, I ate my words as soon as we started planning this trip. We want to be on the Skyliner route, since you can push a stroller right onto the Skyliner. I wouldn't be surprised if we drive to AK and MK to avoid lugging a stroller onto the bus!

Why: A lot of people are probably questioning why anyone in their right minds would take a six-month-old to WDW. Well, first of all, I never said we were in our right minds. In all seriousness, this is something that we had discussed long before we even got pregnant. We've known for a while that our child would grow up going to WDW at least once a year (as long as we are able to financially make that happen ), so we never saw the point in waiting until they were "old enough" to go on their first trip. We've always said that we wanted to wait until our first child was at least six months old before taking them for the first time, and Lincoln will be conveniently turning six months old on December 5th. Not to mention, he'll be essentially free! No, he won't remember this trip, but Jason and I will never forget it. Plus, that's what photos and videos are for!

We've set our expectations for this trip basically on the floor. If we get on one ride at each park, great. If we have to cancel our dining reservations and eat at the Pop food court every night, no biggie. We know we'll be spending less time in the parks than we have in the past, we're just excited to be going back! By the time we go back, it will have been a little over a year since we returned from our last trip. This is the longest we've gone between trips, so we are ready to be back in the Disney bubble!

Up next: Dining reservations and general plans

 

[k8einwdw]

Have a fab time!

Thank you!

Can't say I disagree I like this kid already!

I’m hoping he’ll grow to love it as much as we do, or he’s going to resent us for dragging him there every trip!

I literally laughed out loud after I saw all of the snooze fest pictures!

For a kid who barely naps at home, L has been soaking up these stroller naps! Disney wears him out!

 

[k8einwdw]

Some moments from the last two days…

 

[LeighM]

Were we at HS the same day - Tuesday? If so, I'll need to see if we show up in the background of any of your pictures

 

[k8einwdw]

Were we at HS the same day - Tuesday? If so, I'll need to see if we show up in the background of any of your pictures

I believe so!

 

[k8einwdw]

*Long, serious post ahead*

We have been back from Disney for nearly a week, and I of course forgot to bring a notebook on the trip with me, so I *hope* to get the trip report knocked out before I forget everything. But first, I wanted to talk about something serious.

I wasn’t sure if or when I was going to share this on here, but since it is pretty visible in some of the pictures, I’ll go ahead and address it. When we were in the hospital after Lincoln was born, the on-staff pediatrician did the initial check-up that they do for every baby, and came to me with a concern about the shape of his head. She told me to discuss it with our pediatrician, but that she would recommend getting a referral to a neurosurgeon.

We brought it up with our pediatrician, who said that he would probably grow out of it, but he gave us a referral to the office of neurosurgery at Children’s Healthcare of Atlanta (CHOA) just to be on the safe side. We took Lincoln in to CHOA when he was just shy of four weeks old, and there, he was diagnosed with Metopic Craniosynostosis.

Craniosynostosis is a condition in which two of the plates in the skull fuse too soon. They are supposed to fuse around 9-10 months of age, but with Craniosynostosis, they fuse before birth, so where there should be a soft spot, there isn’t. Metopic Craniosynostosis presents itself in the suture of the two plates along the forehead, which causes a triangular-shaped head (Trigonocephaly), and the ridge that you can see on Lincoln’s forehead. If left untreated, this can put pressure on the brain as it grows, and cause seizures, developmental delays, and chronic headaches, among other issues.

The good news is, we live in a world with modern medicine, and it is treatable. On February 10th, Lincoln with be having Cranial Vault Reconstruction with Frontal Orbital Advancement. I won’t go into detail because it’s pretty graphic, but if you’re curious, there’s plenty of info online (just be forewarned, there are usually pictures as well). We’ll be at CHOA for four nights - one night in the ICU, and three in a regular room.

As anyone can imagine, Jason and I are pretty scared. While we have peace knowing that we’re doing the right thing for Lincoln, the thought of handing our then 8-month-old over to a nurse and having to wait for 4-6 hours during the surgery is terrifying. There are days when it’s all I can think about. We are thankful that Lincoln is young enough that he won’t know to be scared. In some cases, Craniosynostosis isn’t caught until later on, and I can’t imagine having to prepare an older child for a serious surgery.

If you are a praying person, please keep the three of us in your prayers as we near February 10th. If you aren’t, please send positive thoughts our way. We know we are doing this to give him the best possible future, but that doesn’t make it any less frightening.

 

[Back!Elbow!Shoulders!]

*Long, serious post ahead*

We have been back from Disney for nearly a week, and I of course forgot to bring a notebook on the trip with me, so I *hope* to get the trip report knocked out before I forget everything. But first, I wanted to talk about something serious.

I wasn’t sure if or when I was going to share this on here, but since it is pretty visible in some of the pictures, I’ll go ahead and address it. When we were in the hospital after Lincoln was born, the on-staff pediatrician did the initial check-up that they do for every baby, and came to me with a concern about the shape of his head. She told me to discuss it with our pediatrician, but that she would recommend getting a referral to a neurosurgeon.

We brought it up with our pediatrician, who said that he would probably grow out of it, but he gave us a referral to the office of neurosurgery at Children’s Healthcare of Atlanta (CHOA) just to be on the safe side. We took Lincoln in to CHOA when he was just shy of four weeks old, and there, he was diagnosed with Metopic Craniosynostosis.

Craniosynostosis is a condition in which two of the plates in the skull fuse too soon. They are supposed to fuse around 9-10 months of age, but with Craniosynostosis, they fuse before birth, so where there should be a soft spot, there isn’t. Metopic Craniosynostosis presents itself in the suture of the two plates along the forehead, which causes a triangular-shaped head (Trigonocephaly), and the ridge that you can see on Lincoln’s forehead. If left untreated, this can put pressure on the brain as it grows, and cause seizures, developmental delays, and chronic headaches, among other issues.

The good news is, we live in a world with modern medicine, and it is treatable. On February 10th, Lincoln with be having Cranial Vault Reconstruction with Frontal Orbital Advancement. I won’t go into detail because it’s pretty graphic, but if you’re curious, there’s plenty of info online (just be forewarned, there are usually pictures as well). We’ll be at CHOA for four nights - one night in the ICU, and three in a regular room.

As anyone can imagine, Jason and I are pretty scared. While we have peace knowing that we’re doing the right thing for Lincoln, the thought of handing our then 8-month-old over to a nurse and having to wait for 4-6 hours during the surgery is terrifying. There are days when it’s all I can think about. We are thankful that Lincoln is young enough that he won’t know to be scared. In some cases, Craniosynostosis isn’t caught until later on, and I can’t imagine having to prepare an older child for a serious surgery.

If you are a praying person, please keep the three of us in your prayers as we near February 10th. If you aren’t, please send positive thoughts our way. We know we are doing this to give him the best possible future, but that doesn’t make it any less frightening.

*hugs* That all must be so scary and stressful! Thank goodness it was caught early.

Not that it makes it any easier to deal with at the moment but just keep in mind that although this is all new for you it isn’t new to his medical team.

I’ll be thinking of you guys. that everything goes smoothly.

 

[ajrwdwgirl]

*Long, serious post ahead*

We have been back from Disney for nearly a week, and I of course forgot to bring a notebook on the trip with me, so I *hope* to get the trip report knocked out before I forget everything. But first, I wanted to talk about something serious.

I wasn’t sure if or when I was going to share this on here, but since it is pretty visible in some of the pictures, I’ll go ahead and address it. When we were in the hospital after Lincoln was born, the on-staff pediatrician did the initial check-up that they do for every baby, and came to me with a concern about the shape of his head. She told me to discuss it with our pediatrician, but that she would recommend getting a referral to a neurosurgeon.

We brought it up with our pediatrician, who said that he would probably grow out of it, but he gave us a referral to the office of neurosurgery at Children’s Healthcare of Atlanta (CHOA) just to be on the safe side. We took Lincoln in to CHOA when he was just shy of four weeks old, and there, he was diagnosed with Metopic Craniosynostosis.

Craniosynostosis is a condition in which two of the plates in the skull fuse too soon. They are supposed to fuse around 9-10 months of age, but with Craniosynostosis, they fuse before birth, so where there should be a soft spot, there isn’t. Metopic Craniosynostosis presents itself in the suture of the two plates along the forehead, which causes a triangular-shaped head (Trigonocephaly), and the ridge that you can see on Lincoln’s forehead. If left untreated, this can put pressure on the brain as it grows, and cause seizures, developmental delays, and chronic headaches, among other issues.

The good news is, we live in a world with modern medicine, and it is treatable. On February 10th, Lincoln with be having Cranial Vault Reconstruction with Frontal Orbital Advancement. I won’t go into detail because it’s pretty graphic, but if you’re curious, there’s plenty of info online (just be forewarned, there are usually pictures as well). We’ll be at CHOA for four nights - one night in the ICU, and three in a regular room.

As anyone can imagine, Jason and I are pretty scared. While we have peace knowing that we’re doing the right thing for Lincoln, the thought of handing our then 8-month-old over to a nurse and having to wait for 4-6 hours during the surgery is terrifying. There are days when it’s all I can think about. We are thankful that Lincoln is young enough that he won’t know to be scared. In some cases, Craniosynostosis isn’t caught until later on, and I can’t imagine having to prepare an older child for a serious surgery.

If you are a praying person, please keep the three of us in your prayers as we near February 10th. If you aren’t, please send positive thoughts our way. We know we are doing this to give him the best possible future, but that doesn’t make it any less frightening.

That must be scary. I hope all the treatments go well for Lincoln. My boss' son had something similar, maybe it was the same thing, and luckily the surgery went well and he (the baby, not my boss) is a happy healthy little boy. Modern medicine is wonderful.

 

[Swissmiss]

*Long, serious post ahead*

We have been back from Disney for nearly a week, and I of course forgot to bring a notebook on the trip with me, so I *hope* to get the trip report knocked out before I forget everything. But first, I wanted to talk about something serious.

I wasn’t sure if or when I was going to share this on here, but since it is pretty visible in some of the pictures, I’ll go ahead and address it. When we were in the hospital after Lincoln was born, the on-staff pediatrician did the initial check-up that they do for every baby, and came to me with a concern about the shape of his head. She told me to discuss it with our pediatrician, but that she would recommend getting a referral to a neurosurgeon.

We brought it up with our pediatrician, who said that he would probably grow out of it, but he gave us a referral to the office of neurosurgery at Children’s Healthcare of Atlanta (CHOA) just to be on the safe side. We took Lincoln in to CHOA when he was just shy of four weeks old, and there, he was diagnosed with Metopic Craniosynostosis.

Craniosynostosis is a condition in which two of the plates in the skull fuse too soon. They are supposed to fuse around 9-10 months of age, but with Craniosynostosis, they fuse before birth, so where there should be a soft spot, there isn’t. Metopic Craniosynostosis presents itself in the suture of the two plates along the forehead, which causes a triangular-shaped head (Trigonocephaly), and the ridge that you can see on Lincoln’s forehead. If left untreated, this can put pressure on the brain as it grows, and cause seizures, developmental delays, and chronic headaches, among other issues.

The good news is, we live in a world with modern medicine, and it is treatable. On February 10th, Lincoln with be having Cranial Vault Reconstruction with Frontal Orbital Advancement. I won’t go into detail because it’s pretty graphic, but if you’re curious, there’s plenty of info online (just be forewarned, there are usually pictures as well). We’ll be at CHOA for four nights - one night in the ICU, and three in a regular room.

As anyone can imagine, Jason and I are pretty scared. While we have peace knowing that we’re doing the right thing for Lincoln, the thought of handing our then 8-month-old over to a nurse and having to wait for 4-6 hours during the surgery is terrifying. There are days when it’s all I can think about. We are thankful that Lincoln is young enough that he won’t know to be scared. In some cases, Craniosynostosis isn’t caught until later on, and I can’t imagine having to prepare an older child for a serious surgery.

If you are a praying person, please keep the three of us in your prayers as we near February 10th. If you aren’t, please send positive thoughts our way. We know we are doing this to give him the best possible future, but that doesn’t make it any less frightening.

Wow. I cannot even begin to imagine the stress you must be feeling. I am sending all sorts of positive and calming thoughts.

 

[TheMouseFan]

Sending lots of positive thoughts your way! As stated above, I'm sure his surgery team has lots of experience with this particular surgery and will take wonderful care of Lincoln! It doesn't make it any easier on you, but hopefully gives you a little comfort when thinking about it.

 

[cgersic]

Many positive, healing, caring energies being sent your way! I am not a parent, but I am sure you are going through a gambit of emotions. Keep the Faith and know you are all in God's loving hands.

 

[muddyrivers]

My prayers will be with you, Jason, and Lincoln for the next several months! It's a blessing it got detected as early as it did, and I certainly hope that bodes well for the overall outcome of everything.

I also hope you have found an outlet (if not WDWMagic/Disney) that can help take your mind off things while you wait for the surgery. I know for me finding a happy place, even if something mundane like sitting in the parking lot of a Dunkin Donuts with a Disney podcast playing and drink in hand, does a lot of good for my mental well-being.

Merry Christmas!

 

[k8einwdw]

*hugs* That all must be so scary and stressful! Thank goodness it was caught early.

Not that it makes it any easier to deal with at the moment but just keep in mind that although this is all new for you it isn’t new to his medical team.

I’ll be thinking of you guys. that everything goes smoothly.

Thank you, his surgery team has assured us that they perform this surgery almost weekly, so this is routine to them.

That must be scary. I hope all the treatments go well for Lincoln. My boss' son had something similar, maybe it was the same thing, and luckily the surgery went well and he (the baby, not my boss) is a happy healthy little boy. Modern medicine is wonderful.

Thanks Amy. Craniosynostosis is pretty rare, I think 1 in 2500 babies in the US are born with it, But since we made Lincoln's diagnosis public, I've had several people reach out to let me know that they know someone who had the same condition/surgery as him.

Wow. I cannot even begin to imagine the stress you must be feeling. I am sending all sorts of positive and calming thoughts.

Thank you. We are both simultaneously looking forward to and dreading surgery day.

Sending lots of positive thoughts your way! As stated above, I'm sure his surgery team has lots of experience with this particular surgery and will take wonderful care of Lincoln! It doesn't make it any easier on you, but hopefully gives you a little comfort when thinking about it.

Thank you, both of his surgeons have assured us that this is a common procedure for them. We are so thankful to live near such an excellent children's hospital.

Many positive, healing, caring energies being sent your way! I am not a parent, but I am sure you are going through a gambit of emotions. Keep the Faith and know you are all in God's loving hands.

Thank you so much

My prayers will be with you, Jason, and Lincoln for the next several months! It's a blessing it got detected as early as it did, and I certainly hope that bodes well for the overall outcome of everything.

I also hope you have found an outlet (if not WDWMagic/Disney) that can help take your mind off things while you wait for the surgery. I know for me finding a happy place, even if something mundane like sitting in the parking lot of a Dunkin Donuts with a Disney podcast playing and drink in hand, does a lot of good for my mental well-being.

Merry Christmas!

Thank you. We are definitely thankful that it was caught as early as it was. In many cases, Craniosynostosis is not caught until the child is 2-3, and by then, damage has already been done.

 

[Megbutnotmegan]

I’ll be praying for you throughout this time. I’m sure the waiting and worrying will make it feel like forever but I have faith that all will go well. I’m so glad you discovered it early

 

[We love Edna Mode]

 

[k8einwdw]

I’ll be praying for you throughout this time. I’m sure the waiting and worrying will make it feel like forever but I have faith that all will go well. I’m so glad you discovered it early

Thank you both

 

[k8einwdw]

Merry Christmas and Happy Holidays, from our family to yours!

 

[mpaulam]

Hugs, pixie dust, and prayers headed your way! We have a grandson close to Logan's age. As you said...we live in an age with modern medicine!!

 

[donaldtoo]

*Long, serious post ahead*

We have been back from Disney for nearly a week, and I of course forgot to bring a notebook on the trip with me, so I *hope* to get the trip report knocked out before I forget everything. But first, I wanted to talk about something serious.

I wasn’t sure if or when I was going to share this on here, but since it is pretty visible in some of the pictures, I’ll go ahead and address it. When we were in the hospital after Lincoln was born, the on-staff pediatrician did the initial check-up that they do for every baby, and came to me with a concern about the shape of his head. She told me to discuss it with our pediatrician, but that she would recommend getting a referral to a neurosurgeon.

We brought it up with our pediatrician, who said that he would probably grow out of it, but he gave us a referral to the office of neurosurgery at Children’s Healthcare of Atlanta (CHOA) just to be on the safe side. We took Lincoln in to CHOA when he was just shy of four weeks old, and there, he was diagnosed with Metopic Craniosynostosis.

Craniosynostosis is a condition in which two of the plates in the skull fuse too soon. They are supposed to fuse around 9-10 months of age, but with Craniosynostosis, they fuse before birth, so where there should be a soft spot, there isn’t. Metopic Craniosynostosis presents itself in the suture of the two plates along the forehead, which causes a triangular-shaped head (Trigonocephaly), and the ridge that you can see on Lincoln’s forehead. If left untreated, this can put pressure on the brain as it grows, and cause seizures, developmental delays, and chronic headaches, among other issues.

The good news is, we live in a world with modern medicine, and it is treatable. On February 10th, Lincoln with be having Cranial Vault Reconstruction with Frontal Orbital Advancement. I won’t go into detail because it’s pretty graphic, but if you’re curious, there’s plenty of info online (just be forewarned, there are usually pictures as well). We’ll be at CHOA for four nights - one night in the ICU, and three in a regular room.

As anyone can imagine, Jason and I are pretty scared. While we have peace knowing that we’re doing the right thing for Lincoln, the thought of handing our then 8-month-old over to a nurse and having to wait for 4-6 hours during the surgery is terrifying. There are days when it’s all I can think about. We are thankful that Lincoln is young enough that he won’t know to be scared. In some cases, Craniosynostosis isn’t caught until later on, and I can’t imagine having to prepare an older child for a serious surgery.

If you are a praying person, please keep the three of us in your prayers as we near February 10th. If you aren’t, please send positive thoughts our way. We know we are doing this to give him the best possible future, but that doesn’t make it any less frightening.

As the father of a now 29-year-old, born at 1lb. 4oz. DS, I can relate to a large degree.
We also have 2 daughters that were born full-term (one before our DS and one after).
DS spent 4.5 months in the NICU.
At one point while he was still in the NICU we were informed that he was developing premature retinopathy in his eyes. He had been off intubation for quite a while by then.
Along with him being born so small, this was now more added stress. We were told if he didn’t get the surgery to correct it he would go blind. We, of course, after consultation, agreed to the surgery. They flew a specialist up from Houston. Fortunately, the surgery went very well, but, he had to be re-intubated for a while afterwards.
My DW and myself can definitely relate to your fear, but, keep in mind, as you said, modern medicine is amazing, and our DS was born almost 30 years ago, so even more so amazing now…!!!
We are praying people, so all the prayers the world can spare for you, your husband, and of course, your wonderful, blessed son…!!!

ETA…
And, a Merry Christmas and Happy New Year to you all…!!!

 

[k8einwdw]

Hugs, pixie dust, and prayers headed your way! We have a grandson close to Logan's age. As you said...we live in an age with modern medicine!!

Thank you!

As the father of a now 29-year-old, born at 1lb. 4oz. DS, I can relate to a large degree.
We also have 2 daughters that were born full-term (one before our DS and one after).
DS spent 4.5 months in the NICU.
At one point while he was still in the NICU we were informed that he was developing premature retinopathy in his eyes. He had been off intubation for quite a while by then.
Along with him being born so small, this was now more added stress. We were told if he didn’t get the surgery to correct it he would go blind. We, of course, after consultation, agreed to the surgery. They flew a specialist up from Houston. Fortunately, the surgery went very well, but, he had to be re-intubated for a while afterwards.
My DW and myself can definitely relate to your fear, but, keep in mind, as you said, modern medicine is amazing, and our DS was born almost 30 years ago, so even more so amazing now…!!!
We are praying people, so all the prayers the world can spare for you, your husband, and of course, your wonderful, blessed son…!!!

ETA…
And, a Merry Christmas and Happy New Year to you all…!!!

4.5 months, I can't even imagine! Thank you for sharing your story!

 

[MickeyCB]

Many well wishes and kudos to your pediatrician for identifying this for you guys early.