Disney with a disabled infant part 2

[PrincessAndrea'sMom]

I am so happy to hear you went and had a great time!!!

Our trip is in four weeks! My mom is giving me a hard time about taking my Andrea. She was sick last week and it started my mom again about how we should not go. My husband and I decided we are going to listen to our hearts and do what is best for our family. I hope your little princess continues to impove! Thanks so much for the update!

 

[amesyrn]

Thank you so much for coming back and updating.

See.....some Drs. only see the medical. They don't treat WHOLE families and this was probably the best medicine your family could have had prescribed. I know! We are in a similar situation except our son is 12 and still undiagnosed. We are going for 2 weeks in March!! I am so very glad that everything went well for you and hope that you will keep us updated on your sweet little angels.

It truly was the best thing for everyone. We came back rejuvenated and ready to keep on going. I can not imagine going through this hell of not knowing for 12 yrs you must be so strong. I hope your family has a wonderful time in March!

I am so happy to hear you went and had a great time!!!

Our trip is in four weeks! My mom is giving me a hard time about taking my Andrea. She was sick last week and it started my mom again about how we should not go. My husband and I decided we are going to listen to our hearts and do what is best for our family. I hope your little princess continues to impove! Thanks so much for the update!

I hope Andrea is feeling better. My mom sounds a lot the same, but sometimes it's more than just the medical as PP stated. She will be taken care of no matter where you are. It helped us so much to just get a little distance from everything. I truly hope you enjoy your trip, and that Andrea stays well.

 

[ILoveMyGirls]

hi, i am sorry to hear about your daughter. her issues sound just like what my daughter was going thru. my daughter had TOF and A/V Canal. Ended up with pulmonary hypertension.

is there a way you could stay home with your daughter and have your husband take your other child? i've had all of that equipment in my house too and had to transport it so i understand.

 

[Happy Dreams1]

To the original poster, I saw a mystery diagnosis episode on those exact smae symptoms! The daughter would stop breathing and it was difficult for to get "re-started" again so they would like 2 or 3 ambulance calls a day when she was really bad. Unfortunately, I do no remember the name of her condition. But I'm searching! Prayers.

 

[Happy Dreams1]

amesyrn, if you are comfortable telling me, what have been the differential diagnoses? I think I have found something on the internet similar to your baby's condition. I really do hope you get that trip and that all goes well!

 

[WeLoveToyStory]

Does she have tracheomalacia? My son was trached at 5 months of age for severe tracheomalacia, larygomalacia, and subglottic stenosis. His tracheomalacia was actually so bad he had to be on CPAP for almost 2 years. I can't remember from the previous post if she is trached or not. If so, tracheostomy.com is a great website for parents/caregivers of trached kids.

Hope she's currently doing well!

 

[Happy Dreams1]

Thank you all for your tips and advice. We just got back from our trip and everything went so smoothly! Disney does such a great job of making the parks accessible for everyone. Alexa only had a few episodes of real concern, and didnt need to go the hospital. (first time since she got sick we were able to go 10 days without something happening...) We came close once when DH ran over her tube and broke it, but surprisingly it wasnt pulled out of her stomach (yay!). Thank you to the man who helped DH and offered to flag the paramedics. With the GAC we were able to do things and then let her rest so she didnt get too fatigued. We would go back to the hotel everyday so she could nap, and were able to have early days. However we felt were able to see and do everything we wanted too.

Our 6 yr old had so much fun... The most magical time was when she was dressed as Belle and we were dining with the princesses in Norway. Ariel took her hand throughout the parade. What a treat... But the best part of the meal was our waitress. She asked why the baby wasnt eating and if she could bring her anything she might like. We explained a little about our situation. She sort of hustled off, she was very busy. But she came right back with a cupcake with gummi bears for our DD6 with tears in her eyes, saying she wished there was more she could do. What I dont think she realized was that she already did it her kindness made our DD6 feel so special. DD6 still talks about that special cupcake. She thinks it was because she looked so beautiful in her Belle gown

We couldnt have asked for a better vacation. Everyone says not to expect too much so you wont be disappointed, but this exceeded all expectations. So much so that DH and I are seriously thinking about doing the DVC. We got to see our baby come a little into her own without so many MD appts. Our 6 yr old was able to just be 6 and we were able to reconnect as a family.

Thank you all for all your helpfulness.

Disney magic right there! So jappy for all of you! And you'll see that you'll get to go to Disney as a family soon again.