Good news and bad news

[LavenderPeach]

As some of you may know, our DS3 has numerous medical issues and because of that he never learned how to eat and has never liked food. He has a feeding tube and has been going to outpatient feeding therapy at Children's Hospital Orange County (CHOC) for a year now. We've been waiting for him to progress enough to go into their inpatient program where he would stay for 3 weeks (with me there too, of course) and get intensive feeding therapy. They keep telling us he might go in this month or that month but then some other medical issue will come up and they postpone it.

Well, the good news is that he's for sure going in September! It will be hard on all of us but it will give him the push he needs to start eating more "real" foods. Right now he's at about the level of a 9-12 month old with his feeding. He's just now learning how to chew and bite and I can't wait until I can just hand him a chicken nugget to eat while we're out instead of having to always bring special food for him. It would be nice if he one day enjoys eating too.

The bad news is that he'll be in the hospital on his birthday. We seem to be having a trend so far where he spends every other birthday in the hospital. At least this time he won't be in any pain so he should be able to have some fun on his birthday. But I realized that he won't be getting his birthday fun card because he can't leave the hospital while he's admitted. He won't know the difference but I'm a little bummed about it. Actually, what makes it even worse is that we'll only be 5-10 minutes from DLR! So close and yet so far! (i know you all feel my pain. ) But a small price to pay for getting DS the help he needs.

 

[PrincessYessenia]

Wow, after going through so much he'll finally be in! I wish him and your entire family nothing but the best. I'm sure he's gonna pull through like a champ. Think about it this way, when you to DL after he's finished with his treatment he should be eating, and that's something exciting to look forward to, his first Disney food! Hehe! Stay in good spirits

 

[LavenderPeach]

Wow, after going through so much he'll finally be in! I wish him and your entire family nothing but the best. I'm sure he's gonna pull through like a champ. Think about it this way, when you to DL after he's finished with his treatment he should be eating, and that's something exciting to look forward to, his first Disney food! Hehe! Stay in good spirits

Thank you! I hope he'll be able to have his first Disney food. That woudl be awesome! I'm trying not to get my expectations too high though because I've learned that feeding therapy is very, very slow. The therapist has reassured me that DS is actually moving along pretty quickly but it still takes a long time especially since the motivation to want to eat isn't there. So I don't really know where he'll be after all this but I'm excited to find out!

 

[PinkBudgie]

That's crummy he will be spending his birthday there instead of DLR.

Well, it is good they are finally making the arrangements.

 

[LavenderPeach]

That's crummy he will be spending his birthday there instead of DLR.

Well, it is good they are finally making the arrangements.

Yeah, I know. Hospitals aren't nearly as fun as DLR but what can ya do. At least it's not like a regular hospital stay. He won't have to be hooked up to any monitors or IVs so that's good. Remember two years ago he was in the hospital on his birthday recovering from surgery. That wasn't a fun birthday for him.

 

[PinkBudgie]

Yes, I remember. At least he will be alert. Do you think he will have a taste of cake?

 

[pixiewings71]

Oh wow, I can't even imagine. I'm sorry that you all have to deal with this and I hope that this is just what he needs to start eating. I hope he's able to have some cake or ice cream soon!! As for the Fun Card, I wonder, if you contacted Disney and explained would they let you get him a card anyway? It's worth a try......

 

[LavenderPeach]

Yes, I remember. At least he will be alert. Do you think he will have a taste of cake?

I don't know if they'll give him cake but I wouldn't be surprised if they tried that. They had cupcakes on the last day of school and I made him eat one crumb. He wasn't too excited about that but he did it. The kid sitting next to him kept trying to put the cupcake in DS's mouth! I'm sure you can imagine how that went over. I had to tell the kid not to do it because DS was getting upset.

Oh wow, I can't even imagine. I'm sorry that you all have to deal with this and I hope that this is just what he needs to start eating. I hope he's able to have some cake or ice cream soon!! As for the Fun Card, I wonder, if you contacted Disney and explained would they let you get him a card anyway? It's worth a try......

Hopefully this will give him the push he needs. He still needs a lot of work in the ice cream and cake department. He loves talking about birthday cakes but eating it is another thing. One time we tried to get him to take a tiny little bite of ice cream when we were out shopping and of course he protested, like he usually does. I can usually convince him to at least try one little taste but he started to scream so we stopped so people wouldn't wonder what we were doing to torture our kid.

I guess I could try asking Disney about the fun card but I think I know what the answer will be. Disney does a lot of charity stuff for CHOC though so maybe Mickey could come visit him at the hospital! That would be funny.

 

[ACDSNY]

One time we tried to get him to take a tiny little bite of ice cream when we were out shopping and of course he protested, like he usually does. I can usually convince him to at least try one little taste but he started to scream so we stopped so people wouldn't wonder what we were doing to torture our kid.

I could just picture trying to explain to other shoppers..."I'm just giving him some ice cream". It's great you can laugh about it. Your attitude is wonderful!

Take a few Disney pictures or toys with you and celebrate the best you can under the circumstances. Here's hoping there will be more enjoyable B-days in his future.

 

[LavenderPeach]

I could just picture trying to explain to other shoppers..."I'm just giving him some ice cream". It's great you can laugh about it. Your attitude is wonderful!

Take a few Disney pictures or toys with you and celebrate the best you can under the circumstances. Here's hoping there will be more enjoyable B-days in his future.

I was picturing the same scenario trying to explain to someone why DS was so upset! With so many medical issues to deal with you really do have to laugh about some of it, otherwise a person would just go crazy!

Yeah, maybe we'll have to decorate his room in a disney theme. Bring disneyland to him, right? At least he's young enough that he doesn't understand that he's missing DL. That would be really hard to explain to an older kid who has been looking forward to their birthday at DLR that they were going to the hospital instead.

 

[pixiewings71]

I don't know if they'll give him cake but I wouldn't be surprised if they tried that. They had cupcakes on the last day of school and I made him eat one crumb. He wasn't too excited about that but he did it. The kid sitting next to him kept trying to put the cupcake in DS's mouth! I'm sure you can imagine how that went over. I had to tell the kid not to do it because DS was getting upset.



Hopefully this will give him the push he needs. He still needs a lot of work in the ice cream and cake department. He loves talking about birthday cakes but eating it is another thing. One time we tried to get him to take a tiny little bite of ice cream when we were out shopping and of course he protested, like he usually does. I can usually convince him to at least try one little taste but he started to scream so we stopped so people wouldn't wonder what we were doing to torture our kid.

I guess I could try asking Disney about the fun card but I think I know what the answer will be. Disney does a lot of charity stuff for CHOC though so maybe Mickey could come visit him at the hospital! That would be funny.

I was picturing the same scenario trying to explain to someone why DS was so upset! With so many medical issues to deal with you really do have to laugh about some of it, otherwise a person would just go crazy!

Yeah, maybe we'll have to decorate his room in a disney theme. Bring disneyland to him, right? At least he's young enough that he doesn't understand that he's missing DL. That would be really hard to explain to an older kid who has been looking forward to their birthday at DLR that they were going to the hospital instead.

You have an amazing attitude about this, he's lucky to have such a great Mom!! I'm not planning a trip in Sept but if there is anything I can do to help please let me know!! We do have some Mickey Mouse shaped guitar picks, if you want to add them to your decorations I'll see about getting some for you to scatter around, sort of like confetti.

 

[WebmasterMaryJo]

I can understand your disappointment that your son won't get his fun card.

But at the same time, this is a big step for him and you. I'm keeping you all in my thoughts.

 

[LavenderPeach]

You have an amazing attitude about this, he's lucky to have such a great Mom!! I'm not planning a trip in Sept but if there is anything I can do to help please let me know!! We do have some Mickey Mouse shaped guitar picks, if you want to add them to your decorations I'll see about getting some for you to scatter around, sort of like confetti.

Aww, thanks for your offer to help. That's so nice of you. Mickey Mouse guitar picks sound really cute. (makes me wish i played the guitar! ) I don't know if DS would fully appreciate them though. You just never know with him what he will like and what he won't even look at or awknowledge!

I can understand your disappointment that your son won't get his fun card.

But at the same time, this is a big step for him and you. I'm keeping you all in my thoughts.

Thanks for the good thoughts! I'm actually really excited to get DS into the inpatient feeding program. We've been waiting for a year to get him in so I'm glad the time is finally coming. When they told me he could go in September my first thought was "whoo hoo! he's going in just a few months!". Then I thought "Oh, he's going to be in the hospital for his birthday again" and then my next thought was "oh man, he's going to miss out on his fun card!". I think it seems worse knowing that we're only a few miles from DLR but we can't go over there! I'm just glad he doesn't know anything about the fun card or what that means so he doesn't know he's missing out. We'll have to go over to DLR sometime before he goes to the hospital and celebrate his birthday early and get him a birthday button. Oooh and then he could wear his pin on his birthday while he's at CHOC!

 

[fairykin]

Prayers left for your little boy. May He be Blessed this year and always.

 

[LavenderPeach]

Prayers left for your little boy. May He be Blessed this year and always.

Thank you fairykin!

 

[pixiewings71]

Well you know where to find me so if you decide you'd like some just let me know.

 

[LavenderPeach]

Well you know where to find me so if you decide you'd like some just let me know.

That's so nice of you. Thank you!

 

[amyamya]

I was reading a trip report of a family who went on the Magic and their little girl was 2 or 3 and on a feeding tube/Pedialyte and didn't eat solid food. She had her first ever ice cream cone when they were at Castaway Cay. They were so excited she was actually eating. They said it was Disney magic.

 

[LavenderPeach]

I was reading a trip report of a family who went on the Magic and their little girl was 2 or 3 and on a feeding tube/Pedialyte and didn't eat solid food. She had her first ever ice cream cone when they were at Castaway Cay. They were so excited she was actually eating. They said it was Disney magic.

How exciting for them! What a great vacation memory! When you have a kid with feeding issues (or any developmental issues for that matter) you really learn to appreciate all the little accomplishments that you would otherwise take for granted. And eating an ice cream cone is a huge accomplishment for someone who doesn't normally eat.


**Update**

I found out today that there is a small possibility that DS could get a pass to leave the hospital for his birthday so we might be able to run over to DLR and at least pick up his fun card and maybe go on a few rides. This isn't a definite thing though. I think it depends on how his therapy is going and if anything particular is planned for that day.

 

[PinkBudgie]

Oh yeah! That would be so neat! I hope you can! You should ask about that as soon as you get there so that maybe that will get put on their schedule!