What about the non-medical kid? Where do they go?

[Kate]

So I asked about who goes to the procedures for adults. How about the kids. So far Sam goes to appointments if they are up here mainly because I'm a SAHM and so both boys go where ever I go. :) Oh-just a reminder, Sam is almost 2 (about 21 months)

When we're down at Mayo he has been staying w/my in-laws. They live about an hour north of the clinic so we stay there and I drive back and forth to appointments or Mitchell and I stay the night in Rochester while Sam stays with Nana. This has worked out great....BUT...we've been sneaking out of the house when he is busy playing. This worked great but I know he is getting too old for this and I don't want to create a complex. He is too young to understand that I need to go with Mitchell, but too old to just leave as he is starting to show signs of anxiety as soon as we get to their house. I'm sure he is starting to anticipate that I'll leave. Obviously I need to start telling him I'm leaving. I don't want him to have to worry everytime I walk out of the room wondering if I'll come back right away or wait a day. :) Poor kid. He is our drama kid and I know he is going to freak out if I tell him I'm leaving. I guess the hope is that it is short lived. (though w/him if he doesn't get his way he'll cry and cry and cry and scream-so I know it could be a tough visit for nana)

Any thoughts on this. He enjoys being there. He plays well and there is plenty for him to do but the more doctoring we do down there, the more he seems to be getting attached to me. Even when we come back up here. I'm starting to feel so guilty because I'm spending so much time with Mitchell-though he needs me right now and I know that...I just hope that Sam doesn't hold it against me. :) I was doing swimming classes with Sam so I would try and get 1 on 1 time with him too but now those are done.
How do you guys handle the second one when the first is having so much going on?

[bryantem]

Most appointments are when the older kids are at school. If they are off or it is summer vacation, they will either stay with me, go to grandmas if she is off from work or stay at the neighbor's house. If there is a procedure, either my mom or husband will take off work.

[ericnrosesmom]

Rose is almost two also. When we have appointments in Indianapolis she usually stays with my mom. She loves going over there and sometimes stays up to a week at a time to give us a bit of a break. My mom has missed alot of bonding time with Eric due to his issues so she's trying to make up for that with Rose.

[Kate]

Rose is almost two also. When we have appointments in Indianapolis she usually stays with my mom. She loves going over there and sometimes stays up to a week at a time to give us a bit of a break. My mom has missed alot of bonding time with Eric due to his issues so she's trying to make up for that with Rose.

Sounds just like my MIL. My mom did a lot with Mitchell-she just seemed to get him a little better. My MIL was more stand offish-not sure why, maybe I just didn't let her do a lot-who knows. ANyway. I think that she is feeling like she can be more of a grandma with Sam-so I don't mind that she is watching him so much. I do worry though that he seems to be getting sort of a complex about me leaving. I know that to some extent it is normal, but I'm feeling that he is getting nervous when we get to their house-like he is anticipating me leaving.

[TaraB]

If it is a school night, then my three girls go to my in-laws--most of Logan's appointments are first thing in the morning, so we drive down to Iowa City the night before. They really have sacrificed a lot this last year due to Logan's never ending hospitalizations/appointments and they are still the most gracious little girls. IF school is out, we take them with us. Andy stays with them at the Ronald McDonald house or hotel, takes them to the mall, or something and I go to the appointments with Logan. We try to include them in the "trip" when we can. And other times we divide and conquer...our youngest daughter might stay with grandma and grandpa, the older girls go to the appointment and hang out with dad and I take LM to appointments...just depends on the number of appointments, the day, you know!

[momma3]

Last year when Kenlie first started her hospitalizations Kaison (he will be 3 next month) stayed with my mom a lot, my MIL some, and even though he loves staying with them, he had to do it so much that he started getting very upset when we would leave him. With Kenlies 4th hospital stay we found out she was going to be in there for "quite a while" and through the help of a wonderful foundation we got an apartment to stay in so Kaison could be with us. Thankfully St Louis Childrens has a sibling playroom, he spent hours every day there and loved it, and it gave me the opportunity to spend time with Kenlie. Now when we go back for appointments we just take him with us and he goes to the playroom. He looks forward to it the whole way up there, and they all know him since we were there for so long over the summer, so he feels very comfortable with them, as do we, leaving him there. (It has a good security program). Apparently the sibling playroom is pretty new, the employees of the hospital actually funded it because they knew how badly it was needed. I praise it to all the employees I can, it was and has been a life saver for us, not sure what we would do without it!

[suzanne2545]

Berkeley and Griffin are in school full time. But since Parker's airway stuff is still in Cincinnati we have overnights every time. During the school year Daddy just gets them on the bus and then a neighbor gets them off the bus or Ian comes home early.

A few weeks ago we had that planned one night turn into a week and it was just a team neighborhood effort to get everything done. We don't have family closer than five hours away.

Of course, when Parker was a baby the boys were much younger and they just came with me to our appointments and when Parker was in patient in Peds they just came to the hospital for the day with us.

Now they are old enough to know that even though it isn't fun or ideal this is just how it has to be. We try to make sure that they get to do something special with daddy while we are gone and Parker and I always pick up a treat for them.

My over all thought is that this is just a fact of life and we gotta do what we gotta do. As the big boys have gotten older we've continued to re-inforce this with them and they get it on a level that is age appropriate for them.

Interestingly, with this last unexpected week in Cincinnati, neither of them mentioned it to their teachers. I'm facebook friends with Berkeley's teacher so she knew what was going on but Berkeley never said a peep and if she didn't know from FB that we were gone she said nothing was amiss. Same with Griffin's teacher after the fact. I think that school for them is always the constant and I'm ok with that for now.

I know when we were gone Ian alternated letting one of the boys sleep with him each night. We try to make it special for them. THat said, we are VERY clear that time away for Parker at the hospital includes lots of unpleasant things that he has to endure, we aren't just doing it for vacation.

[rosi's mom]

My older two have been troopers through this whole situation. The hospital is far enough away that I lived at the Ronald McDonald House for the whole 5 months. I would go home a night or two here and there. The kids came up with dh for the weekends. They stayed with friends or family while dh worked. Now they go to most of the day appointments with us. They travel well and do well at the doctor's offices. They do get tired of it but there isn't much else we can do. We try to have someone come stay with them at the house when we have procedures at the hospital. So far we've managed to keep Rosi out of the hospital except for procedures. We have had to take them to grandparent's houses a couple of times and they do ok there. They just tell me they don't want to stay there for a long time again. They are 3 and 5 now. This whole crazy medical world started when they were 2 and just turned 4.

[Kate]

Berkeley and Griffin are in school full time. But since Parker's airway stuff is still in Cincinnati we have overnights every time. During the school year Daddy just gets them on the bus and then a neighbor gets them off the bus or Ian comes home early.

A few weeks ago we had that planned one night turn into a week and it was just a team neighborhood effort to get everything done. We don't have family closer than five hours away.

Of course, when Parker was a baby the boys were much younger and they just came with me to our appointments and when Parker was in patient in Peds they just came to the hospital for the day with us.

Now they are old enough to know that even though it isn't fun or ideal this is just how it has to be. We try to make sure that they get to do something special with daddy while we are gone and Parker and I always pick up a treat for them.

My over all thought is that this is just a fact of life and we gotta do what we gotta do. As the big boys have gotten older we've continued to re-inforce this with them and they get it on a level that is age appropriate for them.

Interestingly, with this last unexpected week in Cincinnati, neither of them mentioned it to their teachers. I'm facebook friends with Berkeley's teacher so she knew what was going on but Berkeley never said a peep and if she didn't know from FB that we were gone she said nothing was amiss. Same with Griffin's teacher after the fact. I think that school for them is always the constant and I'm ok with that for now.

I know when we were gone Ian alternated letting one of the boys sleep with him each night. We try to make it special for them. THat said, we are VERY clear that time away for Parker at the hospital includes lots of unpleasant things that he has to endure, we aren't just doing it for vacation.

I think that you sound like me. I see that this is how it'll be for us. Minus the neighborhood because we only have one neighbor-though maybe we'll have more in a couple of years. We don't know our neighbors all that much but do have some good friends in town they could help with Sam if we needed them too. I guess I've always tried making some part of it fun for Mitchell, never thought about Sam-poor kid :( I guess maybe I'll have to bring him back a treat when we go. I guess though I felt guilty leaving, I thought he really has the fun end of the deal. But, it does uproot him so I do think he deserves a little something here and there. Thanks for the idea:D